Karen was born on Sunday May 13th, 1979 at St Mary's Hospital, one of the great London teaching hospitals, which happens to be about half a mile away. Prince William, Prince Harry, Prince George ,Princess Charlotte, several members of the English, Greek and other royal families,Elvis Costello, Emma Thompson and Joan Collins were also born there! Mind you, Karen was born like her older sister and younger brother in the Clarence Wing for ordinary folk which has 6 and 8 bedded wards whereas the princes and princesses were born in the Lindo wing which has single rooms, private bathrooms and a gourmet chef.
I was pretty confident, as Karen was a second baby, Elizabeth having been born in March 1976. I thought I knew about breastfeeding etc. and although I was given some glucose water for Karen, I thought just breastfeeding would be fine. I had no idea there was anything wrong. Karen had slightly slanty eyes but then so does my mother's sister. I also did not suspect anything when one of the registrars accompanied by some medical students examined her and tried to look at her eyes even though she was asleep. I thought this was just routine paediatric monitoring. Anyway on Thursday I was told Karen was seriously dehydrated, as she had not been taking in fluids. In retrospect maybe her sucking wasn't that good and she hadn't drunk much breast milk. (One disadvantage of breast over bottle is you don't have those fluid ounce markings to measure how much is going in!) Anyway the upshot was upsetting. She had jaundice and had to leave the maternity ward and go down to the special care baby unit. Here she was undressed and had a gauze mask with big eye pads put over her eyes and was placed in a cot with a phototherapy light over her all of which made her cry.
Now here comes the worst bit. Remember Karen is fine now. Because she was dehydrated they had to give her saline transfusion- salt water to dilute the blood. The doctor given this duty was fresh out of medical school and found difficulty getting a needle into the tiny veins. What I will never never forget was coming in a few hours later having been told to wait till the transfusion was over to see the sink in the unit full of thick blood from my daughter very slowly going down the drain. Anyway after that things got better medically.
I'll tell you about the breaking of the news in a minute but to lighten the mood will tell you something else. I wanted to breastfeed Karen but she'd lost a bit of weight and they wanted her to have plenty. They offered formula but I asked if they had a breast milk bank. Anyway the upshot was that they found an Italian mother on the ward who was producing plenty of milk and was quite happy to donate the overflow as long as I didn't mind if the milk had a slight Martini flavour.
Anyway the Big Chief Paediatrician asked me to tell my husband when he visited me later that day if he could also come in at 9 am the next day to talk to him. Karen had a good night and had breastfeeds from me topped up by Mamma martini and on the Friday morning Gordon arrived with Elizabeth. This time the nurses offered to take Elizabeth away and play with her which was surprising but thought maybe they did that routinely with special care babies' siblings.
Dr. Rivers (The Consultant Paediatrician) made sure we were both sitting down and after saying Karen was making a good recovery from her jaundice said that he was worried about something else and had we ever heard of Downs Syndrome? I asked "do you mean mongolism" and he said yes and explained how they had suspected and had had to do tests, and had test results and anyway they had a policy not to tell parents until 5 days because of Bonding. He then left us alone and then came back a while after to answer questions. I remember asking questions like if she would get married and have a job! I didn't ask about walking and talking. Anyway, later Gordon and Elizabeth left and I was asked if I wanted to speak to a social worker or anything but I think I was just flabbergasted and didn't.
I still was based upstairs in the maternity ward and Karen downstairs because the special care unit was on the same floor as the labour wards. All the other mothers had their babies in cots by their beds so it was quite odd for me. The next day was Saturday and I was beginning to adjust and asked if I could talk to the social worker to be told, oh she doesn't work on weekends. Gordon was more fortunate as a friend who lives up North was in London for a meeting and had asked us to put him up. He was a social worker and had had a lot of contact with mentally handicapped children as they were called then and was able to spend the evening describing great games he had played with kids with Downs Syndrome and what great fun these kids were. The most difficult bit was telling the grandparents on both sides and I delegated Gordon to do that.
I felt very alone and decided the only person who could lend a sympathetic ear was a friend who was an ex-nurse married to a social worker. Here is an extract from what I wrote:" .....another worry is that I'll never be able to lead a normal life again, getting out and about and doing things. Also theres the problem of a third baby-should I risk having another child with Downs Syndrome. And if I had another child would it be to compensate for Karen I am also in danger of thinking of Elizabeth as an only child , and Karen as not a complete person....A nurse cheered me up byt saying these children are very lovable and affectionate but another nurse depressed me by saying parents tend to over protect them..."In hindsight all these fears were groundless but at the time that is how I felt.
After all the horror of the dehydration and the news, things started getting better. My mother, practical soul that she is bought a book called Helping your handicapped baby with some very practical and reassuring stuff in it but the thing that most cheered me up was a remark by a nurse. I was waiting by the elevator to go down to the baby unit when a nurse started talking to me. She told me that all the nurses had known about Karen but had been sworn to secrecy by the doctors and told not to say anything to me. However this nurse said " I know a girl with Downs syndrome and she is going to ballet classes and learning to type." This commonplace remark had a real impact as the Drs. had all been on about she wont do this and she won't do that. The second cheerful thing happened a few days after that. I had been expecting to leave the hospital when Karen was a week old but because of her weight loss I was told she could not leave until she had regained her birth weight and added some more on. The doctors said I didn't need any treatment and was free to go home and leave Karen in the hospital. However, when I had gone out the door of my apartment on my way to the hospital, I had expected to come back with a baby and to walk through that door empty handed would have felt very strange. However I did not need to swan around in nighties and was able to get dressed and wear shoes and the nurses suggested I go out with Gordon and Elizabeth. So we left the hospital and went to Hyde Park near by and we sat on the grass in the May sunshine and I realised that the world had not ended. I understood that Karen was just like any other baby and would be able to go to the park and take part in all the social activities any baby would take part in. I suppose being within the four walls of a hospital for ten days is bound to get you down so this outing into the real outside world was a real breakthrough.
Anyway Karen finally left the hospital after about two weeks and we took up our lives again. We had lots of help quite early on. The physiotherapist was very nice and the room where it took place was a real surprise. I had imagined a room full of lots of unpleasant looking exercise equipment. Instead it had a big soft pile carpet, lots of mirrors and lots of toys including giant balls, a swing and lots else. They also, and the clinic, had a Toy Library. Another good thing was that the hospital social worker (I am now referring to the Paddington green children's hospital, not St Mary's) had a Downs group that was only for children of 6 years and younger and their parents. It met in the evening in the physiotherapy room. On my first visit I walked in to see a sweet little girl in a pink dress called Rashmi who was about 7 months sitting up and even more thrilling, an eleven-month-old called Eduardo who was walking. I was really impressed because Elizabeth who was speaking 12 words at 14 months did not walk until 17 months, as she was a bottom-shuffler. I hadn't realised that children under the age of a year could walk, let along a child with Downs Syndrome. I met other parents of babies the same age without disabilities and parents of older children with disabilities and just got on with things. Another wonderful person was my health visitor. A health visitor is a community nurse. She had great common sense. When I left the hospital I had strict instructions to feed Karen every four hours even if it meant waking her up. I would wake her up and she would be sluggish and not feed well. The health visitor said what I should do was to let Karen sleep as long as she wanted (within reason) and that therefore when she did wake up she would be hungry and therefore want to feed and feed well. I took her advice and in no time Karen was feeding well and growing and thriving. I was determined to do this as I felt that Karen needed to have any opportunity possible to do as well as she could and I felt breast was best here.The health visitor also advised me to go on a breastmilk diet which involved adding cream cakes , avocados and Guinness to my normal meals! I fed Karen until she was 15 months old though by that time it was just a bedtime feed and she was having solids and cows milk.
One more medical problem was to arise before we could finally settle down and get on with our lives. Karen used to suck two of her fingers (just as Elizabeth had) and I began to notice that sometimes suddenly her arm would pull her fingers from her mouth and she looked a bit startled. One day when she was six months old she was having a routine check up with the community paediatrician and at the end of the visit I mentioned this slightly peculiar movement which on cue Karen then performed about 9 times. The paediatrician who had studied this phenomena herself, said she suspected infantile spasms. She mentioned an "abnormal discharge in the brain". This horrified me as I took it to mean she had some sort of infected wound in her brain, but fortunately seeing my horrified face she explained it was an abnormal electrical discharge. Karen was sent to see the paediatric consultant the very next day.
He organised an electro-encephalogram very quickly and within a week she was prescribed steroid injections once a day, derived from pig's pituitary glands if I remember rightly! He had told me it had a 60% success rate which I could see was a 40% failure rate. Her progress stopped and she stopped smiling. Her skin took on a jaundiced colour, although people kept complementing me on her suntan, and she retained a lot of fluid which made her look plump and prosperous. Every day the Home liaison team came round, a lovely nurse and a rather less friendly doctor who was always talking about unpleasant things like brain lesions. Karen had one shot a day for about 3 months and then weekends off and then every other day and then they ceased around her first birthday.
At last we could get on with our lives and were able to have our first holiday apart from two brief weekends away, one of which had involved visiting a doctor to have a shot. We decided that the healthiest place to visit would be Switzerland and chose somewhere near where the Heidi stories had been sent and where my American mother's Swiss grandparents originated from. We went in September. Karen was fifteen months old and Elizabeth 4 and a half and we had a most enjoyable holiday.
Prices were cheap because the summer season was over and the skiing season not yet started. One memory I have is going to a small Swiss village Inn. We wanted lunch and the menu consisted of two kinds of frankfurters with or without cole slaw and potato salad. We enjoyed these sausages and then asked if they had any desserts and were astounded to have a dessert menu with about 50 varieties of ice cream. We then discovered that Switzerland is the ice cream capital of the world where the best of German, French and Italian know-how are brought together to create the ultimate ice cream.
After this episode of infantile spasms was over, Karen enjoyed a healthy childhood. She was admitted to hospital with bronchitis when she was 2 and a half. I didn't stay the night as she was responding well to medication and Elizabeth was only 5. The next day after dropping Elizabeth off at school I went to the hospital to find Karens cot empty. My first worry was that she had been whisked off for emergency surgery but the nurse told me that she was in the playroom so I went in. There she was in a bright pink frilly rara skirt and yellow top, pushing a babywalker along with a big grin on her face. After that apart from one night time attack of croup, some blepharitis, chicken pox and a few other minor childhood ailments she has been fine. Next Episodes .."Karen Goes to School" Karen from Two to Fiveand "Karen Grows Up"Karen from Five to Eighteen.
Karen learning to walk
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