TTTS Parent Stories: Pauline Dodds
I had my first scan at nineteen weeks. By this stage I was already in maternity clothes and feeling very large. The scan confirmed I was expecting twins and one baby appeared to be slightly larger than the other. But no fuss was made by this finding so I presumed it was normal.
By twenty four weeks I was advised by the hospital to give up work as I was very uncomfortable and extremely large. As the pregnancy progressed one of the babies was still growing much larger than the other and the consultant told me I might have a really rare condition called twin to twin transfusion syndrome and then said no more. So of course I thought there was nothing to worry about because if it was a problem they would have done something.
I struggled on for what seem like forever with the remainder of the pregnancy feeling very large and at times in pain and discomfort spending most of the time confined to bed. At thirty seven and a half weeks I went to the hospital for my final antenatal appointment and scan, they took me in ready to be induced. As they were very busy I was not induced until four days later.
I was taken down to the delivery wards around mid morning where they set up an epidural and then broke my waters. After two hours as nothing was happening they thought they would put me on a drip to start the labour off. Late afternoon and I still was showing no signs of labour. They then noticed a problem, the drugs I was being given to stimulate labour were causing the smaller babies heartrate to drop. Immediately they decided to stop the drip and fortunately the heartrate returned to normal.
Still showing no signs of labour it was decided they would deliver my babies by ceasarian section as my waters had been broken many hours ago. Even though I had an epidural the section was performed under general anaesthetic.At 7.30pm Philip was born weighing 7lb1oz followed by Mark a minute later weighing 4lb9 1/2oz. I came round from the anaesthetic a while later to be told I had twin boys who were in the special care baby unit.
I didnt see my babies until the following day. And walked in on a consultant telling some students about twin to twin transfusion syndrome.They were also taking pictures of my babies to use at future lectures on the condition.
As Mark was aneamic he needed a blood transfusion, And Philip was bright red with a high blood count so he was put under the light until his blood count came down. Mark then had a scan done on his abdomen as he only had two main arteries in the umbilical cord instead of the three. The scan showed all was well.
For the first week everything seemed to be going fine, until we were told Marks heart valve which should have closed when he was born had reopened. It was hoped it would close on its own so we just had to wait. Things didnt return to normal and Mark was sent to Harefield Heart Hospital for a more detailed scan which revealled a narrowing on the aorta which needed surgeryfor correction.
When the boys were three weeks old Philip was allowed to come home and Mark went to Harefield for his operation. A week after the operation Mark returned to Hilllingdon Hospital where he was born and had to stay for a further five weeks to gain weight and get a bit stronger. He was very unhappy and inspite of being tube fed he was not gaining wieght so the hospital agreed to me taking him home and we did have some initial feeding problems but soon he was gaining weight very well and a lot happier.We knew Mark had some congenital problems and was warned that as he grew bigger more problems could arise.
At the boys eight month routine health checks it was noticed that Mark had ptosis (a drooping eyelid) which would need surgery to correct at a later date.
Over the years Mark has had to attend a number of clinics and peadiatric hospital appointments. He was three when it was noticed he wasnt walking properly so I asked about this at an appointment and told he was knock kneed and this was not a problem so they discharged him. Over a couple of months his walking deteriorated and he kept falling over so I requested a second opinion.
Mark was diagnosed as having a shortened muscle in his leg and to date has needed two operations and we dont know how many more to follow. He was at four diagnosed with a slight hearing problem and muscle weakness in his hands which makes writing very difficult for him.
At his recent heart check he were told he will still need further heart surgery as the valves on one side of his heart are smaller than they should be and if not corrected will cause problems later on in life.
To date Mark is still smaller than Philip, but they are both in school in separate classes and progressing well.
Who knows what is just around the corner.
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