Cribben, Carly

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[left:e27c9d3255]http://www.cherubs-cdh.org/Album/new/cribben-carly.jpg[/left:e27c9d3255]I received your newsletter from Contact a Family, based in London, and thought I would like to contact you. We have no voluntary organisations in this country specifically dealing with congenital diaphragmatic hernia children so you can imagine how interested I am. I have a daughter, Carly aged nearly 14 years, who was born with this defect on 22 June 1981. She had a left sided diaphragmatic hernia and lung hypoplasia, I do not know if she had a lung sequestration. She was operated on at 7 hours old and struggled for life for the next 10 days. I only saw my daughter just after her birth for a couple of minutes because it was quickly realised that she had a problem. They took her to the special care unit on the next floor and sent me to the mother and baby ward saying that I could see her when I felt a little stronger. During the afternoon I dozed but kept waking every 30 minutes or so to ask why Carly had not been brought to my bed, I was told that she 'had a headache' because of forceps birth. This went on for about 3 hours until suddenly a doctor came to my bedside and woke me. She tried to explain what was going on and told me that Carly would be transferred to the Queen Elizabeth Hospital for Sick Children in London, a sister hospital to Great Ormond Street Hospital. I was still very drowsy from drugs but also very frightened. They said I could go up to special care to see her before the trip after I had taken a bath and told me a nurse would be along to give me a hand. A few minutes later, one leg poised over the bath to get in it, a nurse entered and told me that my daughter had already left. I was devastated, I could not believe it. I couldn't even remember what she looked like, and by that time I couldn't even remember what they said was wrong with her. I spent the next 3 days in a mother and baby ward without my darling Carly, not even a potograph of her. After crying in my pillow for most of this time I discharged myself and went to stay with my mother and father. I fought and fought to be taken up to the hospital to be with her but I was told they had no facilities to look after me if I stayed there with her until the midwife gave me the all clear. I was so unhappy that I begged my husband to take me to see her, which he did on the 5th day. When we arrived at the hospital we went straight to the ward. We were shown to a cubicle that had 2 babies laying in incubators. I was extremely distressed when I found I could not identify which baby was mine. They were both girls, both dark in clouring and around the same age. A nurse pointed to the right hand incubator and to my utter disbelief I looked at the most dainty, dark haired, beautiful dark eyed baby I had ever deen. Until that time my view was that most babies looked the same until they were a couple of weeks old but she looked so pretty to me. There were a number of tubes going into her tiny arms, legs and even her head, she also had a large dressing over her stomach. I had expected her to be on a ventilator but we were told that as she had been progressing so very well they had decided to let her try and breathe on her own only an hour beforehand. This she was achieving with a bit of a struggle but she was doing it. I wasn't allowed to hold her on this occasion so I was upset when it was time to leave for home, but contented that even if the worst happened to Carly then I would have a picture in my memory of her, which is something I didn't have until this time. The next time I went to see Carly was when she was 10 days old. This time I took a suitcase and was determined to stay, however long it took. I was given a room within the hospital sharing with the mother of the other baby Carly was sharing with. This child had the same problems as Carly. Her mother and I struck up a remarkable friendship during the next 6 weeks, one that was to last many years. One morning in her 7th week the nurse came to weigh her and as usual we were expecting her to have lost some more weight, but she hadn't, she had put on 1/2 an ounce!! This was the day she was allowed to go home. When Carly was born she weighed 7lbs 1oz, when I took her home she weighed 5lbs 10oz. She had to continually have a powder added to her milk so that it would stay in her stomach and this also had to be mixed with her baby food, up until she was about 10 months old. Even now she still suffers with heartburn and indigestion but the problem is not severe enough for them to operate. During her early years we had a number of minor problems. She had to keep going back to the hospital for oesophagoscopies to be carried out under anaesthetic, this was to keep an eye on her hiatus hernia. We also had a very scary time when, after a routine outpatients appointment when x rays of her body were taken, we received a phone call at home saying a shadow had been picked up on her head x-ray. She had to go to Great Ormond Street Hospital for a CAT scan, but was given the all clear when it was found that the 'shadow' was just a deformed piece of bone in the back of her head. She also had numerous chest infections and croup on a regular basis and has been admitted in to our local hospital on a few occasions for monitoring during these times. In January 1993, when Carly was 11, she complained of back pain regularly which we put down to her age and the fact that show was starting to develop. I decided to take her to the doctor for a general check up as she hadn't been to the hospital in London for a couple of years. The doctor sent Carly for a chest x ray and when we went back for the results he said that he was quite pleased with her but would like her to see a chest specialist. I insisted that she be referred back to the Queen Elizabeth in London as I had complete faith in them. Normally alarm bells would have started ringing but at the time my father was in intensive care and had been for 4 weeks after a life saving operation and my mind was elsewhere for a while. When the appointment came through it was for March 1993. If you knew the NHS system in this country you would know that an appointment so quick after referral is almost unheard of. This is when alarm bells started ringing and my concern for Carly started to increase. The appointment couldn't come quick enough for me but when it did I found that the consultant who operated on Carly at birth had moved on and we saw a new one. Just as I thought the talk was over he told me that our doctor had noticed on the chest x ray that Carly's backbone had a curve in it and that she would need to see an orthopaedic surgeon to check it out. At this appointment a full spine x ray was taken and on comparison with the one which was taken in January we were told that she had a 64' curve of her spine; it looked like a question mark, with the curve in-between her shoulder blades. The degree had increased 22' since the January x ray. We were told that, in his opinion, she needed operating on immediately to stop her becoming very ill. The condition, if left to progress, would eventually twist her body so badly that her lungs would be restricted and breathing problems could result in a very poor quality of life, even death. After saying she needed immediate treatment costing L22,000, which I will add we could not afford, he told us that there was a two year waiting list on the NHS if we couldn't raise the money. I quickly realised that if we waited that long then all my lovely Carly's struggling over the years for survival would have been in vain. I was not going to let this happen. I learned that my husband had insured the family though work, without my knowledge. After a rushed phone call to my husbands place of work we had confirmation within 24 hours that they would pay for her treatment. You must be able to imagine our joy. Three weeks later, on 7 June 1993, she was in the Princess Grace Hospital in London to have what they call a 2 Stage Spinal Fusion. Eventually I was called to the recovery room and was told that she had vomited during the operation and it went back into her lungs. We nearly lost her again that day so every minute with her, as you can imagine, is very precious to us. Her recovery after this major surgery, as when she was a baby, has been amazing. It was explained very thoroughly to us that, had Carly been born a couple of years earlier then the probability was that she would not have survived. Diaphragmatic hernia babies deteriorate very quickly and can still have major complications during the first 10 days after surgery, as well as after, depending on the severity of the condition. Carly happens to be one of the older children who the medical profession can now compile statistics from and it is appearing that these children can have a higher instance of developing scoliosis in later life, although this was not widely known here when she was younger. It is because of the chest abnormality that eventually makes the backbone bend to compensate. Please excuse my explanaiton but I am not in the medical know-how, I can only put in my own words how I perceive this. It was also explained to us that during infant and junior life the development of the chest area is extremely important to diaphragmatic hernia children therefore, even if the scoliosis had been noticed when she was 5 years old the treatment we would have been offered could have been detrimental to her development, and possibly fatal. After the discussion and explanations my husband and I decided to let sleeping dogs lie and just thank our lucky stars that our daughter is still here with us. We also have a son, Aaron, who is 2 and a half years younger than Carly, and we also have regular visits to the hospital with him! The visits consist of a stitch here and a stitch there when he's bumped his head, fallen off a shed roof or his bike; he was even run over by a car 2 weeks before Carly went for surgery on her spine. But thankfully, these are all visits which parents can expect when they are trying to raise a perfectly healthy, nosy, mischievous, very robust young boy. Carly has recently had a thorough medical at the Queen Elizabeth and they are extremely happy with her progress. Her lung function is better than average and although she knows she will never win a race on school sports day, at least she can take part, which she always does with a smile on her face.


Written by Carly's mom, Sharon Cribben (Great Britain)
1995