The announcement at birth
Coping with health problems
Taking on too much
The ultimate goal
Julien was born in July 1983, in Ales in the south of France. Like all parents expecting their first child, life was full of hope and expectations. We were the perfect couple so it was just natural that we should have the perfect child. Little did we know what was in store for us! Everything went according to plan, perfect pregnancy, swimming and walking right up to the last minute, in perfect physical condition, ready to take on the world! Julien was born in a record-breaking time. I was able to walk into the operation room and to climb onto the labour table without too much bother. The gynaecologist, a grumpy old sod, told me it would take 15 minutes and he was as good as his word. Out popped Julien like a cork from a champagne bottle.
We were overjoyed with our lovely new baby but my husband’s reaction was somewhat more reserved than mine. I put that down to his personality being much less demonstrative than mine in showing his emotions. Julien slept a great deal. Mid-wives and nurses came and went. I prepared myself for the surge of milk. Julien was not very hungry or very lively but the July 1983 heatwave could explain that. Cold compresses were applied to my breasts to prevent them from swelling too much. Julien was suckling and the milk was mounting. This proved to be quite painful so we had to procure an electric milking machine – motherhood wasn’t turning out to be the joyful experience I had imagined. My husband seemed strange and subdued, not at all the happy father!
After a couple of days, no longer being able to keep it to himself, he broke the news to me, saying that the gynaecologist suspected Down’s Syndrome but nothing was certain. He reassured me that the tests were only to prove how wrong the diagnosis was. On hearing the news, we immediately wanted further information and tried contacting a paediatrician who was not part of the maternity ward in those days. However, the gynaecologist was furious when he discovered that we were trying to contact a paediatrician without informing him. He felt we were questioning his competence; he was outraged, stormed into the room, insulted my husband for having broken the news to me without his permission and confirmed our worst fears, announcing categorically that Julien had Down Syndrome, “Mongolian” was the term he used. The news was broken in an atmosphere of tension; no thought was given to our shattered hopes or dreams. It was pronounced with a total lack of sensitivity or empathy.
The head of the ward came to see us in a state of shock, having heard how the gynaecologist had behaved, and tried to put into perspective what a child with Down Syndrome was like if the diagnosis should prove positive, of which we were still unsure. She was in tears and said she hoped the gynaecologist would die from a heart attack he so rightly deserved, in her opinion!
I could not believe that Julien was a child with Down Syndrome. My baby looked so perfect that they had surely made a terrible mistake. I refused to believe it for the best part of the first year. I understand that it’s no easy job announcing such news even with the best intentions. But surely there could have been a better way. Some team work is necessary to help the parents pick up the pieces, suddenly your life is shattered. What you were looking forward to so much suddenly turns into a nightmare but the clock cannot be wound back – but how to go forward?
A psychological accompaniment would have been useful, this should have been done during our stay at the maternity ward and continued on leaving the hospital at the request of the parents. Although the parents have to mourn the loss of the child they expected, everything should be done to welcome the new-born child by the medical team and not to mourn with the parents. The staff should give positive information, help and practical guidance to the parents and all the necessary examinations should be carried out as we know D.S. children tend to have secondary handicaps, such as heart disease, digestive and other associated problems.
Julien got none of this, he left the maternity clinic “Mongolian” but not confirmed. The gynaecologist carried out the “exit” examination and suggested seeing a physiotherapist for his foot and leg problems. We immediately sought out a paediatrician – he was reluctant to give us a 100% confirmation but admitted he expected the worst. Refusing to believe the inevitable, we went home with our beloved baby and waited for the truth to gradually seep in and when the diagnosis Trisomy 21 was finally pronounced we had by then fully come to terms with the problem. The true reality of his handicap began to sink in, the caryotype was the final nail in the coffin of the perfect child we would never have.
Julien’s handicap was pushed to one side in order to allow us to cope with his more urgent concerns of health and diet. He was a very bad breast feeder. We were totally absorbed and preoccupied with his eating problems and it seemed very unfair that he should not only be handicapped but have health problems as well. Coming to terms with a sick baby was no easy matter. A first child is always, I’m sure, an ordeal to some extent, but we were seriously worried. Julien seemed to sleep all the time, the July heatwave didn’t help. His weight went down to 3 kilos, he had lost 400g during the first months although he seemed to be a healthy baby at birth. All our energy went into feeding him, keeping him alive. He was breast-fed for 4 months, we rented a milking machine to put my milk into bottles but bottled milk made him throw up and my milk got scarce since he was not a good feeder and the shock of the news had left me physically and mentally exhausted. The whole process was very painful. Julien was clogged up and he threw up at regular intervals for about a year.
There was no guidance or useful advice given to us apart from the encounter with a homeopathic doctor who prescribed whole grained millet which Julien managed to keep down and which he thrived on. I searched for information everywhere, avid to read all I could about Down Syndrome. At the time, I believed the feeling of exhaustion I felt was normal after childbirth but I subsequently realized with my 2nd and 3rd child that this wasn’t necessarily the case. The physical pain I felt in my heart subsided after a year when I was pregnant for my second child.
We contacted the Down Syndrome association and the C.A.M.P.S. (an early stimulation centre) came to our aid, not in a very sympathetic way – no real guidance, no psychological help but they offered some workshops for Julien, physiotherapy and psychomotor exercises so we felt less alone and also that someone was sharing our burden and doing something to help Julien along even if it was only for a couple of hours a week. It was necessary to break the isolation; being in a state of shock makes positive actions difficult and the task seemed insurmountable. Where to begin? I had a mission, I was going to do everything possible to compensate for his handicap, I read everything I could and tried desperately to put it into effect.
So the first year in Julien’s life was spent trying to feed him, taking regular trips to the doctors and physiotherapists for “clapping” sessions – it was very trying emotionally and physically. On top of this, as I said, I went back to work. I wasn’t very efficient in those days, I felt I was in a daze most of the time, they call that “brain fog”.
When Julien was one, I got pregnant again. I only put on 7 kilos during the pregnancy. Julien was a very bad eater, often ill with ENT problems and didn’t really speak until he was four. Doctors weren’t always very helpful, they put down his bad eating habits to Anglo-Saxon food. His speech defects were attributed to my English-speaking accent. It was nice to know I was the source of all his problems!!! Very encouraging comments!
I can look back and laugh at their stupidity and lack of empathy now but at the time I was devastated. Instead of advice, I got criticism and guilt-laden accusations. I was a foreigner, struggling with the customs and language of my host country, with my entire family in Ireland and I felt extremely alone. My husband was there of course, although very busy with his new career as an architect, which took up (and still does) large amounts of time.
I encountered several doctors who were surely not representative of the medical profession and didn’t live up to the standards that people expect from them. I went to see another gynaecologist some months after Julien was born. He looked at me and said: “Oh, you’re the one who had the Mongolian baby”, and to console me he added, “I don’t know much about Mongolians, I only know” (with certitude!) “that they don’t live long” (just to cheer me up!) “so there’s no point in getting attached, you might as well put him in an institution right away”. I felt, how insensitive and ignorant can you get, and that’s from a doctor, one who knows! Well, I walked out of his practice, on shaky legs, on the verge of tears with Julien in my arms and wished the ground would swallow us both up, there and then!
People always say “you’re lucky he’s Down Syndrome, it could be worse!”. It is of course true, there are millions of things worse which could happen to us. It’s all relative, you just have to adjust your expectations and take life as it comes. They are like normal kids with a bunch of additional problems, health, behavioural, intellectual which are quite time-consuming – it means you have to devote a lot of time and energy to providing for their needs. They need a lot of stimulation, which is very tiring – and you feel guilty if you are not up to the job. They seem to fall into two categories, hyperactive or lethargic, one seems to be a bad as the other. Julien tended to be lethargic, so there was a great need for stimulation.
I became the teacher to educate him, which was beyond my role as mother, who should just spend time playing. I was over-anxious and afraid if Julien didn’t have the necessary prerequisites he would be refused entrance into the mainstream school system. I wasn’t effective, so I felt angry and frustrated. I took on too much. An enormous dilapidated house (360m2) which had to be entirely renovated.
Julien was often very ill, colds, bronchitis, ear infections and sinus problems not to mention his poor eating habits and sleepless nights. For the first year he only ate whole-grained millet in milk and apple puree, which wasn’t great for his speech development. He also had diarrhoea for years. The worst problem was his hearing, because it prevented him from communicating, so he was isolated and cut off from the others. He is naturally shy and reserved by temperament, but his hearing also caused him to retreat into himself, to close himself up in his imaginary world. Since he didn’t speak, relationships were difficult to develop. When his ears were clogged up he had difficulties breathing and sleeping and he would lose his appetite. On top of that, I was working full time and my second son was born 20 months later – three years after that, I had my third child.
Life was indeed difficult. I wasn’t getting enough sleep and I was becoming depressed. I could no longer cope with Julien’s bouts of diarrhoea, then I would cry and feel guilty. Everything got too much for me, the house, the washing, the shopping, cooking, everything. My husband and I would take it in turns to get a good night’s sleep. His job was very demanding or so it seemed. When Julien was 5 and Marc 3, Fiona was born. I became more harmonious and serene, possibly because the boys were at school or maybe I was wiser and more efficient!!!
Julien has grown up after doing many different work placements in various fields. A lot of energy and determination was needed over the years. There were many obstacles and disappointments but he has now procured a permanent, state job in a crèche, run by the Town Hall. He works 4 hours a day, 4 days a week. He is now 34 and living with his girlfriend in their own apartment in our house, fairly independent and autonomous. He has achieved the goal that we set him but above all he is happy and healthy – that is in itself the ultimate goal.