Mother

MY SON, MY STRUGGLE

Mother of an intersexed child

Edited and Translated from the French by Curtis E. Hinkle, Founder of the Organisation Intersex International

The name of the child is replaced by _____ for privacy.

Sometimes life can have surprises in store for us. Sometimes they are good, sometimes bad. However, they are also unforeseeable, even unbelievable.

I am the mother of a young girl 7 years old and of a little “boy” 15 months old. The birth of our son is still engraved in my memory and will remain so for a long time. Our son is a hermaphrodite, also known as intersexed.

Saturday, August 5, 2006, 5:30 p.m., I feel the first contractions. They are extremely intense, actually painful but I am not afraid; I feel calm, peaceful.

At 8:00 p.m., I can’t go on any longer. We leave for the hospital. The contractions are closer and closer and more and more painful. They start in the lower back. The trip seems like an eternity but finally here we are.

I don’t stay long in the examination room. I am almost immediately taken to the delivery room. Labour has started for good, 6 minutes between each contraction. The anaesthesiologist is called in at once. He has a lot of trouble giving me the epidural. The contractions are a lot quicker now. Finally he is able to but I won’t have time to feel the effects. My child is already on the way.

He is born at 11:17 p.m. but I won’t have the time to see him. The midwife quickly takes him away. There must be a problem. That’s when I start to feel totally lost. I can’t talk. I start crying. I don’t understand what is happening to us. The paediatrician comes back a few minutes later and explains that our son has inhaled some meconium. He is going to be transferred to the neonatal ward. I would get to see him for 5 minutes in an incubator before he is taken up to the ward. I haven’t seen his face. I haven’t touched him, felt him. I feel so empty inside. I can’t think any more. My husband is next to me but he doesn’t say anything. He just stays there without saying anything, completely lost.

It is 2 in the morning when I am transferred to the maternity ward. I end up in this room with two beds without my child. There is no one in the bed next to me. My husband stays with me for a little while. I tell him to go home and rest. When he leaves, I am all alone in this room. The nurses come often to see me, to comfort me. But I have only one desire: to see my son, his face, to feel him, just simply to kiss him. I ask if it is possible for me to see my child. The nurses accompany me to the neonatal ward. It is 3 in the morning.

I am in front of a door with a bell I have to ring to get someone to come open it for us. I ring and I wait. A nurse comes to the door and I tell her that I am _____’s mother. She leads me to my baby. I enter a little room with an incubator in the centre of it. In the incubator is my son hooked up to a lot of machines.

I can’t hold back the tears. What is happening to my baby? I am powerless before him, completely overwhelmed. I don’t understand. I would find out later that my baby had respiratory distress and a collapsed lung when he was born.

I spend a big part of the night next to him. I wouldn’t go back up to my room until around 6 in the morning. Around 7 a.m. a young woman entered my room with her baby. I am so unhappy that I start crying again. Hours go by and I have to go back to see my baby. I can’t give him a bottle. He is only fed through a tube. I still hear all these machines that are hooked up to my son. The beeps, the incessant humming and buzzing make me want to throw up.

Sunday, August 6, 2006, my husband can finally see _____. My daughter is present. For the first time she sees her little brother. I see sadness in her eyes. She is not allowed to get close to him. She can only see him from behind a glass window. The only people allowed in the room are the mother and father. My mother and our daughter stay on the other side of that cold glass. I look at them and what I read in their eyes is nothing but sadness and questions.

I would so much like to hold my baby in my arms, cuddle him, kiss him. I can only touch him very gently in his incubator. He is so small. My son weighs only 2.380 kg and is 43.5 cm long. Why is he so small? I remember my daughter who weighed 3.300 kg and was 50 cm long when she was born. When I ask the nurses, there is no answer. They tell me he is rapidly making progress. They tell me that we will soon be able to bottle feed him. Something else that makes me sad is that I cannot breast feed my baby because of problem with milk that I already had with my daughter.

Monday, August 7, 2006, I can finally pick up my son and hold him in my arms. It is also his first bottle, 5 ml of milk and he drinks it with no problems. He quickly goes back to sleep after the bottle. Gently I lay him back into his little bed making sure I don’t get all tangled up in all the tubes. I stay a little while longer with him and watch him sleeping peacefully.

It is rather difficult for me to return to my room. Each time I am confronted with the happiness of my roommate. Of course I don’t hold anything against her. I am even happy for her. Her baby is so pretty. She can pick him up, cuddle him and enjoy him and I am alone without my baby. This woman will be wonderful to me. We spend our days together talking about everything that comes to mind when I am not with my son. Each time I come back from the neonatal ward, she asks me about how my baby is doing. I didn’t know her at all and nevertheless she supported me through this whole period.

I regularly spend my days next to my baby with my husband. The evening is the most painful moment. After a last visit with my son, I feel alone and sad. I can’t explain what I feel. The birth of a child is always a joy for parents and that joy was taken from me.

Tuesday, August 8, 2006, I finally find out that I will be able to have _____ next to me in the maternity ward. I am so happy that I call my husband to tell him the good news.

The nurses change my room and give me a private one. So I have to leave my roommate whom I thank for her supportive words. She will have to leave the maternity ward August 9. I wish her good luck for the future.

_____ arrives around 10 a.m. He is in a little transparent cradle. There are no more machines hooked up to him. I stand there looking at him sleep. He is magnificent. I can’t help it. I have to caress him. I am speechless in the presence of my baby. He wakes up slowly without crying and I give him his bottle which he drinks peacefully. He is calm. Quietly he goes back to sleep.

My husband arrives all excited to finally see his son without plugs and machines. Like me, he is fascinated watching him sleep. My daughter is present also. Finally she gets to see her brother up close. She strokes his cheek very gently without waking him up. She has a marvellous smile when she looks at him. We can finally enjoy _____. He is there next to us, to me.

I am looking forward to going back home to be surrounded by the comfort and peace of my own family.

Wednesday, August 9, 2006, the nurses come to inform me that they are going to have to do a blood test for _____. It is rather difficult for me to stay with them during blood tests. I leave the room so I won’t have to watch.

At noon the paediatrician enters the room to tell me that we will not be able to leave August 10 as planned. The blood test this morning indicates that _____ is losing salt and that they will have to keep him at least until Saturday to do another blood test after having given him salt via a vial every four hours starting today and continuing through Saturday morning.

At the same time he tells me that they are also going to do an ultrasound of the kidneys. The appointment is made for this afternoon. During the appointment, I find out from the technician doing the ultrasound that my baby’s kidneys are dilated. Not serious but something that has to be controlled.

I go back to my room a little bewildered and distraught from this news. The paediatrician comes back to see us. Then he tells me that our baby has a hypospadias, a condition affecting the penis. He tells me this is rather common for boys and that there is nothing to worry about, that they will have to operate on him. He gives me the name of a urologist to make an appointment with.

I felt a little lost that day. So what is wrong with my son? I called my general practitioner who is a wonderful woman.

When my daughter was born, she had some small problems but nothing really serious. She simply had colic, something very common with newborns and she had a little problem with constipation which was in fact difficult to deal with. That was how I met this doctor, a wonderful woman who had always been there for my daughter and who had always been very patient with me. So it was normal that I telephone her. I explained to her what the paediatrician had just told me. She did everything she could to reassure me. She told me to come in to see her as soon as we were released from the hospital.

Saturday, August 12, 2006, the paediatrician comes to see us to inform me that we can finally go home. That _____’s last test results are good. It is 9:30 a.m. I am so happy that I ask my husband to come pick us up right away. Finally we are going home.

The week after our return home was magnificent. _____ is a peaceful child. He wakes up every 4 hours during the day. At night, a real gem. It’s 11 p.m. and time for his last bottle until 4:30 – 5:00 in the morning. He never wakes up crying. We almost never hear him. That is a big difference from our daughter who was much more vocal. She almost never slept during the day and her nights were very short.

Real happiness. I still hear my husband telling me: “It’s almost like not having another child. How calm he is!” Only one small problem. _____ is like his sister. He too has problems with constipation. But since I have already lived through that with our daughter, I don’t panic. We use natural remedies to improve _____’s digestion. This period of peace and quiet will not last but we didn’t know it yet.

Monday, August 21, 2006, it is 5 in the morning and _____ is waking up for his bottle. I change his nappy right before giving him the bottle and in it there is blood. Totally in a state of panic, I wake up my husband. We get in touch with my mother so that she will come to take care of our daughter and we rush off to the emergency room. I am horrified. I can’t think straight. I can’t control my fear.

We arrive at the emergency room at 6:30 a.m. We are received by an intern who asks us to wait for the doctor in a little room they call a “box”. We will wait for an hour. Our baby sleeps peacefully in his little shell as if nothing was wrong. At 7:30 a.m. a paediatrician comes in and examines _____. I did remember to bring the nappy. She tells us they will have to analyse our son’s stool.

In the meantime she took an x-ray of his abdomen. She confirms the constipation problem. We explain to her what we have done the last couple of days to help our baby. She prefers to have us wait a while longer because the analysis of the stool doesn’t reveal anything. She would like to do more analyses. So there we are waiting for our son’s next stool.

At 2:30 p.m. our son finally has a stool. The paediatrician arrives and analyses the latest stool. While waiting on the results, she tells us that we are going to change his milk and start giving him a hypoallergenic milk in case of an allergy to the proteins in cow’s milk. She advises us to go out and get a little air and a bite to eat. They will take care of our baby. No problem. _____ is sleeping. Nothing bothers him.

I call my doctor and inform her of the situation. She doesn’t really think that our baby is allergic but that the problem is caused from the constipation.

Our baby will be hospitalised until August 24. His stools will be analysed several times but they reveal nothing. The only change, his milk. Instead of normal milk he is on hypoallergenic milk. We notice that our baby has more and more trouble having a stool. Only one every 24 hours. But when we ask the doctors questions, nothing serious. I simply feel that _____’s constipation has gotten worse since he has been in the hospital. But nothing doing, we are back home in the afternoon, August 24.

Our baby who was so calm cries a lot, sleeps very little or not at all during the day. Nights are a lot more hectic. I start having a lot of questions about our son’s health.

August 22, 2006, after noticing how agitated our son is, I decide to visit my doctor. She does not have us wait and sees us immediately. She notices that our child has a serious constipation problem. She advises us to put him back on his milk and also to make bottles with Hépar water for him to try to remove the blockage by softening the stool. (Note of translator: Hépar is a brand name of a mineral water high in sulphates, calcium and magnesium.)

We live through a real nightmare which lasts the whole week. Nothing seems to work. Our son is even more agitated. Around 5 p.m. he starts crying frantically. I attribute it to colic which is common for infants.

Difficult trying to calm him down. Two hours later he finally falls asleep exhausted, only to wake up an hour later in the same condition. The only thing I can do to calm him down is give him a bottle which he drinks with difficulty while falling back asleep. I notice that he is not as relaxed as he was before. I spend my nights next to my child, afraid, because I am convinced that __________ has a problem.

7:30 Friday evening, September 8, 2006, our child is still screaming but this time his screams are different. He is screaming but I am sure that he is crying because of pain.

I automatically remove his nappy and there is an enormous ball in the same area where his right testicle would be. We start to panic. I can’t get _____ to calm down. We decide to call our doctor who asks us to come immediately to her office.

We wait in the waiting room. She asks us to come in and examines our child. She confirms this lump in the testicular area. _____ isn’t crying any more and slowly he falls asleep.

Our doctor advises us to wait to see if the lump is still present. She thinks there may be a torsion of the testicle. But when she feels the testicle, she doesn’t find it in the scrotum.

We return home, anxious, petrified. We wait with great anguish for our child to wake up so that we can look to see if this growth is still there. It is midnight when our son wakes up for his bottle. Our first reaction is to change him and look at his testicle. We are happy when we notice that the lump has disappeared, but we decide to take our son to the emergency room the next morning anyway.

It will be a long night for me. I lie awake listening. I have a lot of trouble trying to sleep. I am so worried.

Saturday, September 9, 2006. It is 5:30 a.m. _____ wakes up for his bottle. I change him first and then I notice that there is a new lump, this time on the left side. I go into a total panic. I don’t understand anything that’s going on. But he is not crying. He is calm.

After his bottle we leave for the emergency room.

We get there at 7 o’clock. Here we are right back where we started, once again in the emergency room. He examines our son and also confirms that there is another lump. We tell him that yesterday evening he had an identical lump on the other side. After a few hours of waiting in one of those austere “boxes”, a paediatrician finally comes in to see us and inform us that our child has an inguinal hernia on the left side.

Not once did they speak to us about the right side. He is explicit in his diagnosis of a hernia on the left side but is not sure about the right side. He tells us that this is not serious, that our child is not suffering and that it is not necessary to operate right away. I am crushed to hear what they are telling us. How can they say that my child is not suffering? They didn’t hear him screaming last night.

We leave the hospital at 2 in the afternoon with only the names of three visceral surgeons at NECKER. We go home but we are not at all comfortable with all that has happened. At 3 in the afternoon when I noticed that the lump was still there, we leave for NECKER.

Our child will be seen by an intern. She informs us that he has two hernias and not just one and that it will be necessary to make an appointment with a visceral surgeon as soon as possible. But since it is Saturday, there is only one surgeon on duty. So we go back home with the same three names to contact this coming Monday.

Not feeling at all comfortable about all this, I prefer to call my own doctor again and she gives me the name of a surgeon she knows. She is convinced that it is urgent that we have _____ operated on because the hernias are too painful.

We spend the whole evening in a state of total stress.

Sunday, September 10, 2006. It is 8 a.m. When I take _____’s temperature, it is 100.4 F (38 degrees C). I give him something to lower the temperature but I feel that he is very agitated. He isn’t sleeping anymore. I warn my husband by telling him that I think our child’s behaviour is very bizarre. I bring him to bed with us and try to put him to sleep but he wakes right back up each time crying and then goes back to sleep.

I take his temperature again and this time it is 102.2 F (39 degrees C). I can’t take it anymore. We leave and take our child to the emergency room.

We have the same paediatrician as the first time. She asks us some questions about our son’s health. We inform her that we were there yesterday for a problem with a hernia. She undresses our child and confirms that there is a lump.

She explains to us that she cannot know what to do or what is causing the temperature without a urinalysis, a blood test and a spinal tap. I am paralysed when she mentioned the word spinal tap.

She prefers that we not stay there during the exams and she will also go ahead and do an ultrasound for the hernias.

A few hours after the exams, the paediatrician comes back to see us and explains that the urine tests indicate a urinary infection and the spinal tap is negative. The ultrasound has not yet been done. She explains that our child will need to be hospitalised for the urinary infection. He will stay for 4 days.

During the stay in hospital, our child was really agitated. I asked several times about the ultrasound for the hernias. Several times I was told there was no emergency.

It is Thursday, September 14, 2006. I feel that our child is very agitated, that is his crying a lot. But the intern relays information from the paediatrician that this is totally normal, that all children cry and fidget. I am disgusted to hear this. And then he tells me that our child can leave, not to worry about anything. They will start an antibiotic before we leave and after that treatment we have to put _____ on another medication to prevent repeated infections.

I am so angry that before leaving the hospital I decide to make an appointment with the Ultrasound specialist as well as with the surgeon that my own doctor knows. The appointment for the ultrasound specialist is for Monday, September 18, 2006 and the one with the surgeon is for Wednesday, September 20, 2006.

When I return to the paediatrics ward, the intern came to see me and asked why I had called the Visceral Surgery Department at Saint-Germain to make an appointment for ______, that it was not necessary that I do that now. I understood right then that the surgeon’s secretary had contacted the paediatric ward to ask for _____’s medical records and that they obviously did not like that at all. I simply answered this intern by stating that I was _____’s mother and that I am of the opinion that my child must be treated by more competent people and thereupon we left that hospital which I no longer trusted.

I am so disgusted by how this hospital acted and I later would write to the director. They reacted immediately but not one time did they admit that they had been lax in their treatment of _____. They also confirm in their letters that they knew about our child's ambiguity. What a bunch of lies we had been put through.

Wednesday, September 20, 2006. Finally we have an appointment with a surgeon. We are so stressed out that I cannot hold back the tears. The surgeon immediately takes our case and asks us to come in. He examines our child and he confirms that our child does have two inguinal hernias and that it is important that he be operated on. The date of the operation will be September 29, 2006. We leave, a little more relieved, but still very frightened.

We are completely exhausted, lost, at wit’s end. We felt as if no one wanted to listen to what we had to say. Each hospitalisation resulted with our child coming back home worse than when he went in. There was not one doctor who had listened to us in that paediatric ward. All they had done was to make us the problem by kindly telling us that we were stressed out and that our child was not suffering.

That the problem was with us, that we were worried about nothing. That our son was well but that the parents were perturbed. I found these words to be violent. In other words, we were being described as paranoid. We had come to the point where we were beginning to wonder if all this would ever end. If our child would ever get better.

Now there was a date for the operation. We were finally a little more reassured. A doctor had finally listened to what we had to say and understood why we were so upset. He understood why our child was in pain and he understood our pain also.

Friday, September 22, 2006, _____ wakes up screaming. I am alone in the house. I can’t get him to calm back down. I am so concerned about the hernias that I remove his nappy and to my horror, there are huge lumps on both sides.

I decide to call my mother who arrives right away and we both leave for the emergency room in the car. But I am in such a state of panic because of how _____ is screaming that it is too hard for me to concentrate of driving. I decide to stop at the firehouse and ask them to take us to the hospital. The firemen were very reassuring. I am such a wreck that I start crying in the fire truck. I am so afraid for my child. There seems to be nothing we can do. I am in such anguish that I cannot control my fear.

We arrive at the emergency room and we are taken in very quickly by a nurse. She confirms that the pain is a result of the hernias and she can tell that they are extremely painful. My son calms down but the lumps still stand out. Another nurse joins us. He tries to reduce the hernias but to no avail. They decide right then to call a surgeon to operate on our child.

The personnel at the emergency ward of the Saint Germain Hospital are marvellous. We wait in a little room but nurses come in regularly to visit us. A paediatrician comes in to speak with us. He tells me that the surgeon thinks it is advisable to keep _____ and to perform the operation as soon as possible which will be on September 25, 2006. We are then transferred to the Paediatric Visceral Surgery Ward the same day. We had already met the personnel in this Visceral Surgery Ward when we had the appointment with the surgeon on the 20th of September. They are wonderful and incredibly kind.

We were immediately accepted into the ward and met with the personnel. When they saw me crying all they time, they comforted me and spoke with me. They took the time to listen to me. They understand that we had been through a lot of painful times with our child. I call my husband to tell him to come to the hospital and that our son will be operated on September 25, 2006. I quickly explained to him what had happened and why we were there.

He will come and join us as soon as possible. When he comes in, I see his concern all over his face. I notice how distressed he is. All we can do is hug each other and hold each other in our arms. We couldn’t speak. We were paralysed with fear.

I am so frightened that it is difficult to calm down and stop the crying spells. My mother who is next to me tries to comfort me. I crack completely. I am so tired and distraught that I can’t even think any more. My mind is empty.

_____ is sleeping but his sleep is disturbed and irregular. I am sure that something is not right but I can’t sort it all out and I just don’t seem to be able to understand anything.

The surgeon will explain the operation they will perform on our child and will advise us to go home and rest. That we do not need to worry. Our child will be in good hands. He thinks we need to recuperate and get our own strength back because we are not able to think clearly right at the moment. That we have already lived through too much pain.

And then I think about my daughter. I need her near me and she needs us. Her little brother’s health problems have been something she has had to live through also. I don’t want her to feel left out. I want to be there for her too. During all these difficult moments, my daughter has been so marvellous. For a child 7 years old she has been so mature. But she also needs to be comforted and reassured. I do not want her to grow up too fast. I want her to enjoy her childhood too.

We go back home with my mother but I feel so sad leaving my son in hospital. During the whole trip back I don’t speak. I just look out into a void. I can’t think. I keep my pain to myself.

We spend the week-end next to our child.

Part Two

Monday, September 25, 2006. We are at the hospital early in the morning. The nurses prepare our son for the operation which is scheduled for 9:00 a.m. At 8:30 they come to get _____. He is sleeping peacefully. I give him a big kiss and we watch him taken away on a stretcher and then I start crying. However, I think that our child will be better after the operation. Time passes. It is 12:30 when the surgeon comes to see us in the room. I can tell by his look that something is not right.

He asks us to come into his office. He explains that during the operation of our son’s right hernia that he discovered that our son was sexually ambiguous. I look at him crying, but what is he saying? No, this is impossible. His words echo in my head. I am shattered.

However, I do understand what he is telling me, I just don’t want to believe it. I even think he is crazy. My husband says nothing but I know he is in the same state I am in. That he does not want to believe it.

The surgeon takes time to explain it to us. He explains that he sent a sample of our son’s gonad as well as a picture to someone he knew at Robert Debré Hospital. This doctor who is a surgeon is a person who is very knowledgeable about intersex conditions. Our child will be transferred to that hospital.

We cannot believe it. We just can’t come to terms with it. How can anyone say that our child is ambiguous sexually? He is a boy. He has a penis, a scrotum, everything you need to be a boy. I don’t understand. He must be mistaken.

How can someone be born sexually ambiguous? Why our son?

The surgeon explains to us that in fact our child has characteristics of both sexes present. But more examination will be required to determine exactly what condition our child has and to what degree he is affected.

My husband says nothing. He has no reaction. I feel he is lost, overwhelmed.

But what is happening to our child?

_____ will be transferred Tuesday September 26, 2006 to Robert Debré Hospital. The surgeon at Saint Germain Hospital took care of everything, the transfer and the appointment. I can never thank the personnel at Saint Germain enough. They have always been close to us.

Tuesday, September 26, 2006, I leave with my son in an ambulance for Robert Debré. When we arrive we are taken to the Visceral Surgery Department of the hospital. The surgeon comes to see us and explains that we are going to hospitalise our child in the endocrinology ward starting tomorrow in order to start the tests on our child as soon as possible. He will remain in the intensive care unit of the surgery ward all night because he is a little baby just a month and a half old. However, I am not allowed to stay with him during the night. It is 5 p.m. when I leave _____ to go home.

The trip back home seems like an eternity. So many questions. Such a jumble of things. Once back home, I wonder why this is happening to us, why this is happening to my son.

I cry all night long. My husband is next to me but I know that he is suffering as much as I am. He doesn’t understand what is going on either. We think that after this operation of the hernias that everything will really return to some order but that is not the case at all.

I am so desperate that I call my own doctor to tell her what is happening to our son. She is marvellous. She does everything to reassure me. She was there for us every time our son was hospitalised. She always asked for news. She takes time to explain the situation to me. But I am not really able to listen. I am absent minded, unable to concentrate. I just feel the need to be somewhere else, not here, not now.

Several times, I felt that life just wasn’t worth being lived, too painful, too difficult sometimes. But each time I would start thinking about my children and for them I just don’t have the right to give up and do nothing. But I do recognise that I did think about leaving this world I did not feel that I belonged in anymore.

Wednesday, September 27, 2006, the surgeon announces that my son will be transferred to endocrinology. He tells me that after the results that we will meet with doctors who will explain them and the different stages that we will have to go through with our son. However, if we have questions, he will always be there for us and will answer. He also told me that my son’s second hernia will be operated on but not right away, that the most painful one was on the right side.

Our son will remain in hospital in endocrinology until Saturday, September 30, 2006. Many blood samples will be taken. But in spite of everything, I feel that my son is still very agitated.

We come back home Saturday, September 30, 2006.

The days will be difficult. Our son is more and more agitated. He sleeps very little during the day and his nights are very unsettled.

Sunday, October 8, 2006, our son is having more and more difficulty drinking his bottle and starts crying every time. At 4:30 p.m. we leave for the Saint Germain emergency room because we realise our child is finding it harder and harder to get adequate nourishment.

A paediatrician comes to see us after having examined our son and he announces that our child may be suffering from a gastro-oesophageal reflux. He will be hospitalised until October 13, 2006.

Since our son had already been hospitalised in the Visceral Surgery Department and the nurse in the emergency room already knows us, she does everything she can so that our child can be readmitted in the same department.

A treatment will be given to soothe the reflux problems.

We go back home Thursday, October 13, 2006.

We feel that our child is a little calmer but he remains restless in spite of everything. There are moments when I start thinking that I will once again see my child right back like he was during the first week in the maternity ward.

We have a lot of trouble getting ourselves back together. We are still very upset about the announcement that he was ambiguous sexually. And the other hernia is still there.

I remain next to my son but I am not able to convince myself that that he will get better. We still don’t have our son’s test results.

I can’t stop crying. I can’t think. I stay shut in with my son for days on end without speaking. But I must be strong for my daughter and my husband. But I just don’t have the strength. I feel so empty inside. I move about but I don’t really know where I am going.

Monday, October 16, 2006, a nursery nurse sent by Saint Germain Hospital comes to visit me. She immediately understands that my own health is not the best it could be. She also sees that my child is very agitated, that he is not sleeping. She advised me to call Robert Debré hospital. She is convinced that the reason for our son’s restlessness is because of his hernia which today is as big as my clenched fist.

After she leaves, I call the hospital’s endocrinology department. The doctor who is in charge of my son’s medical treatment advised me to come into the emergency room. I call my husband and tell him that it would be preferable to take _____ to the Debré emergency room. We arrive at the emergency room and we are received by two doctors. They telephone our son’s surgeon and he decided to keep our child and operate on him. The hernia is more and more prominent and painful.

Our child will be operated on October 17, 2006.

During his hospitalisation he will also be seen by a paediatrician and after an examination, she will change his treatment for the reflux which was not really strong enough. During the operation, the surgeon took a tissue sample of our son’s gonads. He did not make the gonads descend into the scrotum. He is waiting for the results. Then he informed us that after the results our child would once again be operated on to make the gonads descend into the scrotum.

These tests were done in order to determine if the gonads were testicles or ovaries and especially to see if they were functional. Moreover, he informs us that they still do not have the results from endocrinology, but as soon as they have them in their possession, an appointment will be set up to give us all the information and to explain our child’s condition to us. The operation to make the gonads descend will not be scheduled until after the test results and after this initial meeting to explain our child’s situation.

We go back home Friday, October 20, 2006.

Upon our return home, we feel that our child is calmer, less restless. We are almost relieved but we still have doubts, fears. I would have to go back to work October 23, 2006 but I feel incapable. I need to be with my son, just simply to enjoy some time with him.

Nevertheless, I still find it difficult to convince myself that my child will be alright. I am always on guard. I dread the least sign of a temperature. I am not even able to distinguish the different cries of my child which indicate hunger or sleepiness anymore.

I realise that I don’t even know my child anymore. I have lost 2 and ½ months of his life that I will never get back. 2 and ½ months that my child lived in hospitals. 2 and ½ months that I did not get to watch him grow. These 2 and ½ months are lost forever.

We have to become acquainted with our child, be able to recognise his different cries. Just simply to live. I am incapable. I feel I can’t take this any longer.

My doctor prefers not to let me go back to work. She does not feel I am ready to resume by work duties.

During all these difficult periods, many people have supported us, my doctor, our friends and my employer also. Every day he would call me and ask for news. Every day he gave me support.

I am not released to go back to work until November 8, 2006. During this time I try to get to know my child again. In spite of everything, he is really better but I still cannot convince myself completely. I still live in fear. I can’t control my anxiety. Days pass by but I am still in the same state. My employer advises me to come back to work part time to get out a little and see people.

I start back to work part time in the mornings November 9. The first day was really painful for me, but I know that he is with a wonderful nanny. My daughter’s nanny, my best friend. The first person I confided to about our son’s sexual ambiguity. She was so wonderful during all the difficult times. Her support, her words brought me a lot of comfort. When I arrived at work, I collapse in my employer’s arms. He lets me cry but tells me that everything will be alright now.

The weeks pass and I finally begin to see a difference. My son is a lot calmer. He is sleeping better too. He no longer has any problem with constipation. But I still stay on guard. From time to time he still has a low-grade fever, nothing serious, but for me it still is difficult to cope with. I know that with a child you don’t talk about a high fever until it is above 100.4 F (38 C). But anything close to that brings back memories of the worst.

Just teething, nothing serious. But because of all the suffering our child has already gone through he does not seem to handle the slightest pain. This is difficult to handle. He wakes up crying during the night. And each time I feel that same fear that I can’t control. I feel guilty for not being able to get myself back together, for feeling afraid and anxious.

But gradually we begin to understand and we are able to slowly reassure ourselves.

It is November. We receive a letter from the Robert Debré Hospital for an appointment with the doctors who are treating our son. Endocrinologists and a surgeon.

We find out the day of the appointment with the doctors that our child presents with characteristics of both sexes. Externally he looks like a boy but internally he has a uterine cavity and vagina. Our child’s karyotype is XY/XO. He “lacks” one chromosome but we don’t know which one.

The samples taken of the gonads reveal that the gonad on the right side has functional testicular tissue but the one on the left is not functional. Our child does not produce sufficient quantities of testosterone. There is testosterone present but not enough.

We are a little lost along with my husband. They also say that they cannot explain why our child is ambiguous. No genetic explanation because the tests were done also on my husband since they both have the same blood type. The only thing they can tell us is that our child is not an isolated case, that this happens but they are not able to tell us why it happens.

I think that the words which were the hardest to hear were when they explained to us that we could choose the sex of our child.

For us there was nothing ambiguous about our child. He was a boy and will be a boy. It was very difficult for my husband and me to make any other choice. We also thought about our daughter. How would we explain to her that her little brother was perhaps a little sister? That was impossible. We didn’t know how to explain that to her.

Our decision was to let our child remain a boy. To this day I am still convinced that we did not make any choice. I look at my child and I see a boy. But we also have doubts about this choice. And I think we will always have them. Have we made the right choice? We are dealing with the unknown. Only our child will be able to ever know what he really is.

They inform us that an operation is scheduled for April, first to make the functional testicle descend and to remove the non-functional one. But they also tell us that they are going to have to give our child sex hormones to try to enlarge his micropenis.

These hormones will be given by injection three times at three week intervals. The first injection will be October 23. The effects are almost immediate but there are also the other effects. Our child is a lot more restless after the first injection and has the same reaction with the other two.

After this appointment, we were still lost. We felt totally alone in the world. I think about the operation. My child will have only one testicle. The thought bothers me. A boy with only one testicle. His appearance will be different.

It was after this appointment that I wanted to understand. Thanks to the internet I could read articles about people who presented with sexual ambiguity. I wanted to know and more importantly to understand.

Christmas is approaching. We are still somewhat on edge about our child. We decide to spend Christmas at home. We are not ready yet. Everything goes fantastically well. We are getting to know our child better, learning how to react more calmly to the least sign of a temperature. We especially try not to panic. We are beginning to have more confidence in ourselves.

It is the beginning of February but the articles only explain what we already know but I am not willing to give up. I need to understand certain things in order to move on, perhaps even contact people who are like my son. So I persist with my research. Perhaps I can finally learn to accept my child’s difference. But I know that we have to accept his difference for his own future.

Friday, February 9, 2007. It is 8:30 p.m. and our child has a temperature. I try to convince myself that all will be okay but I feel a knot in my stomach. I give him some acetaminophen for the temperature. I clean his nose. But I can’t resist the urge to call my doctor. She reassures me and tells me simply to keep the temperature under control.

It is midnight. I hear my son crying. I go into his room to check and I see him fidgeting. I pick him up. His arms and legs keep moving all the time. He is burning up with a temperature. I try to calm him down but the kicking and fidgeting just get worse. He is having more and more trouble breathing. I think he is going to faint. His arms and legs are convulsing.

Since I am not able to calm him down, I go wake up my husband and ask him to call emergency. When they came, my son was calmer. We are finally able to take his temperature and it reads 104.18 F (40.1 C). The paramedics tell us to take him to the emergency room. Then our child starts to throw up. He starts crying again and to have convulsions. We wait for him to calm down and before leaving we give him some more acetaminophen. In the meantime we called my mother to come over and stay with our daughter. She didn’t hear anything. She is sleeping and that is better for her.

We arrive at the Saint Germain Hospital at 1:30 in the morning. We are received by an intern. After hearing our descriptions, he tells us that our son has had convulsions and the he prefers to keep him overnight for observation. My husband tells me to go home. He will stay with our son overnight.

The next morning at 7:00 I wake my daughter up to take her to the nanny. I explain to her that her little brother is in hospital because he has a very high temperature and that her father stayed with him. I can sense that she is sad to find out that her little brother is back in hospital again. I try to reassure her but I am not very convincing myself.

It is 8:00 a.m. when I arrive at the hospital. My husband has been up all night. Our son has been restless the whole night.

The paediatrician comes to see us and explains that they will have to keep our child. They want to make sure that the convulsions are caused only by the high temperature. They want to do an encephalogram that day. The temperature has come back down and it now reads 101.8 F (38°8 C). He has finally fallen back to sleep from exhaustion but we notice that he is still fidgeting in his sleep. He will remain hospitalised until February 15, 2007.

After a throat infection, he comes down with a urinary infection and then gastroenteritis. According to the test results, the convulsions were determined to be caused by a very high fever.

We go back home February 15, 2007. Our child is very tired. He still has gastroenteritis but that should be sorted out with time. I call my doctor February 16 because I feel that our child has too many liquid stools. She comes to the house and prefers a stronger treatment for him than the hospital. Slowly everything gets back to normal. We are still frightened. I still am anxious. I still don’t feel totally reassured.

I feel like we are starting all over again and going backwards and starting to live through all these past months once again. My husband is more confident than I am. He tries everything he knows to convince me that our child is fine and that he will get sick like any other child but I still have doubts.

Every time my son is sick or has a temperature I lose it. I don’t know how to control my fears and panic attacks. However, I do know that he is doing better. But deep down inside me there is still this fear. And with each passing day, I can’t forget it.

We try to resume our everyday lives but I am left with my doubts, my fears and anguish.

It is difficult also not to think about our child’s ambiguity. We have so many questions. It is hard for us to understand something that is so different to us but we are trying to move forward, to make progress. For my part, I keep on looking for answers. I need to understand certain things. I read several studies and articles. Not once have I been able to find out why our child was born intersexed. And I don’t think I will ever have an answer to that question. So I prefer to find out how to help our child and especially how I can grow and make progress in my own understanding and acceptance of this difference.

I even ask the endocrinologist from Robert Debré Hospital if it is possible for me to meet people who were born intersexed or even other parents who have already dealt with this situation. She is not able to answer us that day but she promised to let us know if she found out anything. She also explained to us that each parent reacts differently and that they prefer not to talk about this difference and usually prefer to keep it secret.

Personally, I can’t accept that. To grow and move on, I need to know, to understand so every day I continue my research.

Tuesday, April 17, 2007. We are at the hospital for our child’s operation. This involves making the testicle descend into the scrotum and removing the non-functional gonad.

The operation is completed without complications. Before the operation we discussed things with the surgeon and along with my husband we decided we did not want to remove the uterus and vagina if they posed no real health threat to our child.

He informed us that during the operation that he had done an endoscopic examination of the cavity and since it was too close to the testicle which was vascularised, he also would not have made the decision to remove the uterus and vagina. Furthermore, he explained that if our child rejected this cavity because of infections that the only solution would be to remove it.

We go back home April 19, 2007.

The date of our son’s next operation is scheduled for Friday September 21, 2007.

Finally we are going to get to spend some time with our child and get to enjoy getting to know him. We are aware that our son is going to have to have an operation for the hypospadias because of the complications which appear more serious than most cases which are causing repeated and very serious urinary infections. So we are still on guard. We can’t help taking our child’s temperature regularly.

We are still living in fear in spite of everything. But we are handling things much better now.

Days pass by peacefully. We are starting to get our lives back. We are trying to live our everyday lives once again. And I continue searching, reading articles and getting information.

It is now July and after doing some more research, I come across a forum.

As I read the messages, I realise that the people who are writing them are intersexed themselves. I spend some days just reading their messages before deciding to jump in myself. And then one day, I do it. I jump in. I decide to join this forum and to explain in a few words my son’s condition. I did not have to wait very long before I started receiving understanding and sympathetic messages. As I continued reading the messages on this forum, I realised that these individuals were part of an organisation which offers support for intersexed people.

I will contact some of the people representing this organisation in France. Their messages are a real help. They take time to listen to me. They understand our situation and the problems coping with our child’s difference. Every day I can’t resist going back to visit this forum where I can finally speak about my child and my own pain. By explaining their own experiences, I was able better to understand our child’s difference. I thank them for their help and I am still in contact with them today. Every time I have doubts, questions, they are always there for me and to reassure me.

We do not go on holiday but decide to stay home with our children. We are still a little on edge. We are still not totally able mentally to clearly accept that our child is better. The month of August is a month for us to enjoy just with our children. We need to get to know each other and try to be a family.

I start back to work. When I get there, I find my mail box full of messages from the forum. There are so many messages of support, kind words and I am so happy to read them and there among all the messages I find one from another mother who is going through the same situation with her child. I read her message and I can sense the same distress, the same sadness. In our private messages to each other, we talk about our own experiences, our doubts and about when we were told about our children’s difference. Today, I think we found each other so we could be together in learning to understand our children who are perhaps different but they are very dear to us and we have to learn to live with this difference.

There is also a person who sends me messages which stand out because of their incredible kindness. Our e-mail discussions are so reassuring and comforting to me. He never judges me concerning the choices that we have made for our child. He is the president of this international organisation. He explains to me about his own experience which helps me understand my own child and he helps me most by helping me grow in my own acceptance of our son’s difference.

Thursday, September 20, 2008, _____ has to be hospitalised again at 2 p.m. for his operation. We know that _____ has to have this operation for his own health but I am so sad deep down inside. Our child has to go back to the hospital and for us this is becoming more and more difficult. We leave for the hospital filled with sadness. It is hard to talk about this with my husband. We arrive at the Visceral Surgery Ward and the nurses take us into a room facing the nursing station. Blood samples as well as urine tests are taken.

We leave the hospital around 7 p.m. to be with our daughter. It is hard to leave our son but it is equally difficult not being with my daughter.

She knows that her little brother is going to be operated on but she doesn’t want me to spend the nights with him. I know this is all difficult for her. So I have to be with her too during this time.

Around 8:30 p.m. we call the hospital to get information about _____. The nurses reassure us and tell us that our son is doing well.

The night will be a short one for me. I feel like I can hear _____. And all of a sudden I feel an enormous emptiness within me.

Friday, September 21, 2007, it is 7 a.m. After dropping off our daughter at the nanny’s, we head towards the hospital. Before we get there, we get a call from the surgeon who tells us that it will not be possible to do the operation today because the urine tests indicate an infection.

We are both relieved and upset. Upset because we had not noticed any sign of an infection, no temperature or anything else. This is the first time that _____ hasn’t had a temperature when he had a urinary infection. How can we manage this problem if there is nothing we can see?

We arrive at the hospital upset, but the surgeon comes to see us and reassure us and explains that the infection is very mild which is why he does not have a temperature yet. So, once again, we go back home with an antibiotic which we have to give him for 10 days for the infection and then another urinalysis to be done at the city laboratory. A new appointment is scheduled for October 5, 2007 if the new urine test does not indicate an infection.

We have not told our daughter that her little brother is coming back home. When she comes home from school she is so happy to see him that she can’t stop hugging and kissing him. We too are so happy that _____ is with us but we know it will not last. He will have to go back for the operation.

So until the fifth of October we are going to enjoy having some time again with our children. We are going to try not to think about this operation. Hard to do but we have to be there for them.

Thursday, October 4, 2007, _____ has to go back to the hospital. We feel like we are once again reliving the past. The same sadness comes back. It is 2 p.m. when we get to the hospital. The same tests are done and we once again don’t feel good.

The rest of the day we spend playing and cuddling with our child. We leave the hospital in a worse state than the last time. The analysis that was done did not indicate any infection and we are almost sure that _____ will be operated on tomorrow.

We call the nurses to find out how he is doing.

Friday, October 5, 2007 around 7:30 a.m. we are contacted by the nurses who tell us not to come to the hospital yet because the operation is rather long. It lasts usually 4 hours. No longer able to just sit around doing nothing, we decide to go to the hospital around 1 p.m. We get there at 2 p.m. We go directly up to the surgery ward and the nurses inform us that ____ has just come out from the operating room and that he is now in the recovery room.

We meet with the surgeon who explains that our son’s operation went very well and that ____ will have to stay for 11 days. We stayed with him during the whole time in hospital. We had the impression that our child was not suffering too much. He was regularly taking medications for pain. It was helpful not seeing him suffer. It would have been unbearable otherwise. _____ gets better quickly. We are impressed with the results. Slowly our child will have to learn to urinate again.

Tuesday, October 16, 2007 _____ can finally come home. He no longer has the pouch for urine but he has to be kept on a tube which is inserted into his abdomen until Friday October 19 just in case there is a problem.

Wednesday, October 17, 2007, we are off again to the Debré emergency room because the tube came lose. We then noticed that there was a leakage around his little “willy”. The doctor who spoke with us told us that this was not serious but it is hard for us to not be concerned. Because of our doubts we called the Visceral Surgical Ward to speak directly with the surgeon who was not there that day so we will have to call back tomorrow.

I did not have to call him back. The surgeon himself calls me. After explaining my own concerns, he reassures me and explains that this often happens.

He simply tells me not to worry and that he will explain more to me on Friday.

Friday, October 19, 2007, we meet with the surgeon who informs us that the slight leakage was not serious in and of itself but that _____ will have to be operated on again but that it will not have to be done until a year later. He mentioned future follow-ups.

So we decide not to think about these future follow-up procedures or the other operation. In the surgeon’s eyes I felt that I could see a little disappointment, perhaps a little disappointed that such an important operation had not been totally successful. For me, this operation is unbelievable. I am not disappointed but happy with the result and am not concerned about the follow-up.

The only thing that counts for me is that _____ not be constantly bothered with these recurrent infections and most of all that he not be in pain. Today _____ is doing very well. It is November and it has been quite a while since the operation.

But we do not forget that _____ was born intersexed. We still have to learn how to live with this difference and most of all to accept it. Accept it so we can help our son in his development in a world which is totally normalised. After all _____ is not sick, he is just different. But difference can be frightening so I will try each day to help my child not feel rejected.

It is true that for the time being this difference is not really visible but one day it could be quite otherwise.

It is true that we are in uncharted territory. We don’t control the mind of our child. Only _____ will know what he is. I will always be there for him. I will give him all the love he needs. I will help him become what he wants to be. All I want is for my child to be happy.

There will still be moments of doubt, of fear but I will fight so that they will not become insurmountable. We have already gone through the mourning period of not having a perfect child. Parents dream of having a perfect child. Today our only dream is that our children be happy.

We will probably never forget these moments of pain but today we live just like any other family.

I have made contact with some marvellous people who because of their willingness to share their own experience have helped me understand this.

The mother, who is in the same situation, who has the same fears, the same doubts, is a marvellous woman. We are often in contact. Our friendship is based on our mutual love for our children. We will meet each other soon. This will be our first time together. We will finally see each other and I am sure that this will not be the last time.

And then, there is this person far away from me in another country, who through his comforting messages has been able to remove all international barriers. His help, his ability to listen have been so precious to me.

I want him to know that thanks to him, I have once again found hope for _____. I am so happy to have met him, a virtual meeting perhaps, but this meeting has been a marvellous experience.

Far beyond our borders there is no difference, only people with very large hearts who share their own experiences without ever judging others.

There are no words powerful enough to ever thank him (my friend from another country) for all that he has done for me and my family. I am so grateful for his kindness, his friendship and especially for his words.

He has helped me all along this journey which is only starting but finally I see a glimmer of hope which had been taken from me for so long.

Out of love for our children we can remove mountains. Out of love for our children we can give our own lives.

I am the mother of an intersexed child and I am proud to be his mother.

Note of translator: The Organisation Intersex International has a support group with a special section just for parents. Currently the group has sections for French, English, Spanish and German speaking intersex people, parents and friends.

You are invited to join us: