Charlie and Maddie’s Story
My husband Steve and I had always wanted to have four children so when I got pregnant in 2001 with our third, we were well on our way. We already had two daughters, Imogen and Georgia who were 3 and 2 at the time.
All was going well until my 20 week scan showed that the baby had a duodenal atresia, a block between the stomach and bowel preventing food getting past the stomach which would need correcting straight after birth. We were told that this could also be a marker for Downs Syndrome so an amniocentesis was recommended.
We were devastated. I felt like my world had ended. You don’t ever think something could be wrong with your baby. That kind of thing happens to other people.
I had the amniocentesis the next day and after two agonising weeks, the results came back clear. We were extremely relieved.
The rest of the pregnancy was busy with regular scans at Kings College Hospital; not easy with two small children to care for. I got extremely large as a result of the baby being unable to swallow and digest, so was very uncomfortable toward the end of the pregnancy.
I went into labour at 36 weeks and gave birth to my third beautiful baby girl, Maddie, weighing in at 6lb 1 oz. She was immediately taken away to the Special Care Baby Unit. I found this very hard to come to terms with as it goes against nature to have your baby taken away straight after birth. We went down to see her as soon as we were allowed and gazed at her tiny body as she lay in her incubator awaiting her operation.
The next morning I went down to see her just before she went to theatre and kissed her little head hoping all would be well. A few minutes after her operation, the surgeon came to see us and told us the operation went very well. We could visit our baby but he warned us she would be covered in tubes and ventilated for 24 hours as a general anaesthetic sometimes makes babies drowsy and they might forget to breathe.
We went down to the unit immediately but were surprised to see her breathing on her own. The nurses said she’d woken up very shortly after returning and spat out the ventilator ! A very feisty and independent little girl had come into the world.
The next week was a rollercoaster as the nurses started weaning Maddie off the TPN fluid which was nourishing her, replacing it slowly with the milk I’d been frantically expressing.
At the end of the week she was taking 1ml of milk through a tube and I was begging the doctors to transfer her to our local hospital, The Princess Royal University Hospital, so she could be near us as I’d been discharged and would find it very difficult to visit with two little ones at home and my husband back to work. After careful consideration and a promise from the nursing sister on SCBU that she could return if things didn’t go well, the doctors agreed to the transfer.
When she reached the unit at the PRUH, the nurses were wonderful. They managed to get her off the TPN extremely quickly as she was responding so well. We were told at the beginning to expect her to be in the unit for at least eight weeks but, at the end of her first week in the new unit, I got the phone call that every SCBU parent wants – “Hello, it’s the nurse at Farnborough Hospital (as it was then known), Your can come and take your baby home this evening if you like!”
Maddie’s continued to thrive since birth, astounding every day with her many achievements. She has Cerebral Palsy, caused either by lack of oxygen in the womb or by the trauma of such an early operation. However, this hasn’t prevented our feisty little girl from becoming the most amazingly determined, clever, friendly and fiercely independent person. She attends mainstream school with the help of a carer and regularly has riding lessons at a special riding school for the disabled. Although she drives an electric wheelchair, she can walk a little and is well loved by her many friends. The doctors told us she would probably never walk, but once again, she has shown us all that she’s not a kid to take things lying down!
Our fourth child, a son Charlie, was born in 2004. This pregnancy was not without its problem wither. Having suffered a previous miscarriage it was discovered that I had antibodies which had developed during my second pregnancy. They’d not affected Maddie as her blood type is the same as mine, but they could affect a further pregnancy if the baby had a different blood type, so when I got pregnant with Charlie, we were worried.
I had a fairly trouble free pregnancy with regular scans to make sure the baby was okay. Everything was going well until I had a fall during my 32nd week. A scan the next day showed the bay was swollen and needed to either come out or have a blood transfusion in the womb to save its life. Our blood had mixed, possibly as a result of my fall. A decision had to be made and we opted to have the baby delivered to the safety of the special care baby unit at Lewisham Hospital, which specialises in Rhesus Disease.
The next day I had Charlie by caesarean section. Again, he was whisked off immediately after birth. I was given a photo of him and waited anxiously to be allowed to see him. That evening I was finally able to meet him and although I was prepared this time for the wires and monitors, it was still heart wrenching to see my little boy hooked up to so many. He was ventilated as he was so early his lungs weren’t developed enough for him to breathe by himself. He’d also been through a full body blood transfusion to flush out all the antibodies.
I was better prepared this time though, having been through it all before with Maddie. I felt confident about taking him out of his incubator and giving him kangaroo care. His little 5lb body sat very nicely on my chest, tucked inside my bra! When he was in this position, his oxygen levels went up to almost normal.
He was taken off the ventilator after a couple of weeks and transferred to CPAP but was backwards and forwards between the two as his oxygen requirements were constantly fluctuating.
I just couldn’t see a time when we would be able to get him into the lower dependency unit, let alone home. I was able to stay in the hospital for a week due to the caesarean birth, but then I had to leave him there and go home, relying on my husband to take me up there and go home to look after our other children before coming back to collect me. When he returned to work, I had to rely on friends which was difficult due to the girls being at nursery and school and Maddie needing additional help.
Thankfully a month after birth Charlie was transferred to the PRUH and I was able to get there myself once I’d taken the two older girls to school and Maddie to nursery. I had two precious hours with him until it was time to collect Maddie and then another two hours until collecting the girls. The nurses were fantastic with Maddie, sometimes even entertaining her for a few minutes to give me a break or time alone with Charlie. They found her a little bed to nap on, a little chair to sit in an even allowed me to bring a portable DVD player for her to watch.
By this time, Charlie was on oxygen through a nasal tube and the nurses allowed me to adjust his levels myself and administer his vitamins. I felt confident caring for my baby and the nurses were wonderful allowing me to do as much as possible for him.
After a couple of weeks Charlie was allowed home on oxygen and I was given the appropriate training. The day before he was due to come home, disaster struck! I walked into the unit to find Charlie’s room curtained off. I knew immediately something was wrong. I was told he’d become poorly and they were going to perform a lumbar puncture to test for meningitis. I was terrified that, after he’d come so far, we were going to lose him.
Thankfully the results came back clear and it was determined that he needed a top up blood transfusion which sorted him out! He came home a couple of days later, just before Christmas. The best Christmas present I have ever had !
Charlie’s now nearly 6 years old and is doing very well. He shows no signs of his early breathing problems, having come off oxygen just a few months after coming home.
We now have four beautiful children.
Nikki AdamsGo Back