“It’s amazing to see them being sisters and growing up together”
Gareth delivered his baby daughter Georgia in their bathroom when his wife unexpectedly went into labour at their home in Perivale in London. Georgia’s birth went well, and everything was fine, however, while being checked out at the hospital it became apparent that everything was not as it seemed. The doctors found a series of problems needing urgent attention and the family ended up in what can only be described as a nightmare.
“We’d heard the second baby can come quickly…but not that quickly,” said Gareth. “We’d been to the hospital the week before thinking the baby was coming but nothing happened. When the contractions started again, we thought – let’s wait a little while and see, and then it all happened fast. My wife was in the bathroom shouting, I think she’s coming now! I phoned for an ambulance and the operator told me what to do. I thought wait – so I’m doing this? Something else took over. There was no point in thinking about anything other than getting it done right. I delivered Georgia and the paramedics turned up about a minute later. I was staring into the middle distance and just recall them saying congratulations, and about four minutes later I realised I’d done it but by that point they’d taken her off me, had cut the umbilical cord and cleaned her up while I was still sitting there shell-shocked.
“We were taken to our local A&E to get checked out. There wasn’t any indication of something being wrong during pregnancy and even when Georgia was born, we only thought that she was a bit small. We were extremely surprised when the doctors started spotting things that were unusual. The most urgent issue was that she had an imperforate anus; Georgia had been born without one. Then things went from bad to worse very quickly; her oxygen levels dropped, and she had a seizure. The doctors were trying to keep her stable and weren’t quite sure what was going on and Georgia was whisked away for treatment.
“We were left there thinking – what’s going on? There was instant panic and disbelief about what we’d just seen and a creeping dread about what was to come. Not long later, we were taken up to the room to see her. Georgia was incubated and the thing I remember most is the doctor asking us; do you have a name for her, and do you want to take a photograph of her? All I could think was – why are they asking us that? We struggled to say her name and almost didn’t want to say it in case it tempted fate. Then we were asked to leave but saw her as she was wheeled past and she had a cover over her. I think I overheard one of the doctors saying, “we don’t know what’s going to happen next.”
“By this point we’d been awake about 40 hours and there wasn’t anything we could do for Georgia or anywhere for us to sleep. My wife stayed at the hospital and I went home, but I don’t think either of us slept. During the night Georgia was rushed by ambulance to Southampton Children’s Hospital. There was a serious problem with her heart and her condition was worsening. It had to be 75 miles away in Southampton because all the London hospitals were full, and Georgia needed specialist cardiac care.
“My wife’s parents drove us to Southampton; we were too exhausted and just sat in the back of the car. When we arrived, we were told Georgia’s pulmonary artery wasn’t connected but she had a hole in the heart which was allowing her to oxygenate her blood. The hole in her heart was actually a piece of good fortune as otherwise she’d wouldn’t have lasted long.
“We were told that they might need to operate but due to the risks involved, it would be best to delay the surgery until she’s stronger. Then they said get some rest and see Georgia in the morning. It was very unsettling. We still didn’t know what was happening and it felt wrong to leave her on her own. That night was spent in a hotel and the next morning we found out that Georgia didn’t need heart surgery straightaway but did need an urgent operation to put a stoma in so that her faeces could leave her body.
“After the surgery, she was in the neonatal intensive care unit for two weeks recovering and they monitored her heart and supported her with oxygen. While Georgia was in hospital, we stayed at Ronald McDonald House Southampton.
“As soon as she was better, Georgia was transferred to the Royal Brompton Hospital in London for open heart surgery. It took more than two months for her to be ready for it. My wife stayed with Georgia in the hospital, while I worked and took care of our eldest daughter who was at school. The hospital is close to where we live so we visited Georgia regularly.
“We’d learned that Georgia’s actual condition was Cat Eye Syndrome, a serious genetic disorder that can affect many parts of the body. It gets its name because it makes the eyes look similar to a cat’s; this is because there’s a hole in the iris. Georgia has it in one of her eyes. Cat Eye Syndrome is so rare that the doctors have never seen it but know how to fix the various things that arise from it. It’s pot luck as to how bad you get Cat Eye Syndrome; some people are unaware that they’ve got it while others like Georgia have lots of problems as a result. Her next problem was the liver.
“As soon as Georgia’s heart was fixed, she was transferred to King’s College Hospital in London for liver surgery. The surgeons needed to build her a new bile duct because hers didn’t develop properly and it needed to be done quickly to prevent further liver damage.
“While she was at King’s College Hospital we stayed together as a family at Ronald McDonald House Camberwell. It made such a huge difference to stay close to Georgia and not have to pay for hotels or travel backwards and forwards from home.
“Both the Southampton and Camberwell Houses are really nice and much better than you imagine. We assumed it was basic accommodation and we were just thankful to have somewhere to stay that was close to Georgia and wouldn’t break the bank. But the facilities are great, and you need those small comforts like having a nice shower and comfy bed. We didn’t feel as though we were having to make do on top of everything else.
“The House is an interesting environment that gives you a real sense of perspective. There are families who’ve been staying for months and as a result it’s become their home. Dinnertime in the House is like unofficial group counselling where everyone comes together after a long day in the hospital to relax, recharge and support one another. The first time you meet, you’re tentatively asking about each other’s situation. Talking to other families helps you process what’s happened and it makes you realise that you’re not alone and there were people in worse situations than us getting on with it and finding the positives.
“My eldest daughter really enjoyed staying in the House. Sam was just four years old at the time and didn’t think too hard about what was happening. To her it was like a holiday in a hotel. There are TVs, play areas and other siblings to play with. She met a boy that she played with every day which gave her a sense of routine. What was really important to her was being with us without any separation and she also got to spend time with Georgia.
“When Georgia eventually came home, we had to become trainee doctors very quickly. She had 12 medicines and we had to learn how to administer them, in what amounts and times of day, and how to feed her through her nasal feeding tube. It was an intense whirlwind of appointments followed by smaller operations for two years. Georgia had an operation to give her an anus and then, once that worked, another surgery to close her stoma.
“Unfortunately, Georgia missed that instinct to feed when she was a newborn and has been playing catch-up ever since. She recently had an operation to fit a feeding tube directly into her stomach and have the nasal tube removed, which was getting in the way. We hope that Georgia will now make better progress at learning how to swallow and eat. It will also help her speech develop and give her more confidence because people won’t stare at her in the street.
“Georgia is now three years old and doing really well. It’s a relief to not have any operations coming up and there’s nothing hanging over our heads. She’s developing well and has found her voice and personality. Georgia and Sam are now able to enjoy things together and there’s no barrier to that now. It’s really amazing to see them being sisters and growing up together.”