Guildford couple Michael and Beth Reeve were overjoyed to be expecting their first child, but excitement turned to shock when their unborn baby was diagnosed with a life-threatening condition.
When Beth and Michael arrived at the hospital for their twenty week scan, they couldn’t wait to catch a glimpse of the new life they’d created. “We watched in awe as the sonographer looked around the baby. We loved seeing our beautiful little one moving – it made the bump seem real.” Unfortunately, their wonder and excitement was to be short-lived. “Then the nurse turned to us and said ‘I’ve had a good look at your baby and I’m afraid I can see that something may be wrong’.”
It was the kind of moment that every expectant parent fears. The sonographer explained that she thought their baby had a congenital diaphragmatic hernia – and Beth and Michael then had a worrying hour to wait for a consultant who could explain more about CDH.
“It seemed like a very long time. I’d been so excited about this baby – my mother had been a foster carer since I was six, so I’d lived with babies in the house my whole childhood and I’d always looked forward to having my own children. Michael was also very excited about becoming a daddy – we were serious pram gazers! We knew would adore this baby no matter what, but it was such a scary road to be on, and we wanted to make sure the baby would make it.”
The consultant confirmed the diagnosis of the condition, which occurs when the diaphragm doesn’t fuse properly and organs from lower down in the body move upwards, squashing the heart and lungs and stopping them from developing properly.
Beth and Michael were given an appointment at St George’s Hospital, three days later. “Those three days were agony! We spent the time looking on the internet for any information about CDH. We discovered that it occurs randomly in about 1 in 3000 pregnancies and that the survival rate is 50%. This statistic broke our hearts. The baby felt so alive inside me – we couldn’t imagine losing it.”
In the meantime, Beth and Michael decided to find out the sex of their baby. “We wanted to bond as much as possible in the time we had together. We were delighted to find that he was a boy, and immediately came up with the name James.”
The day finally arrived for the referral scan. “It was the worst moment to date. Our consultant offered us an amniocentesis, as there was a suspected link between James’ CDH and another condition called Edward’s Syndrome, which, with CDH, is not considered to be compatible with life. We decided not to put this baby through any more than he had to, and that regardless of the outcome we would continue the pregnancy.”
After that, Beth was scanned each month and James seemed to be developing well. “According to the scans, his lung volume was looking positive and he was showing no other ‘syndrome signs’ so we clung on to that. We got through the next 18 weeks with faith and hope, praying that this baby would come home with us and that we would be able to watch him grow. We didn’t set up his nursery or buy a pram or car seat, we just wanted to wait and see.”
Beth was due to be induced at 39 weeks, and the couple were told to expect a hospital stay of 8 to 12 weeks, if James survived. “Part of us wanted James to stay inside me forever – he was safe there, where he didn’t need to use his lungs.”
James was born on the 9th of June 2009, weighing 6lb 13oz. “There were eight people in the room during the later stages of my labour and James was taken as soon as he was born – to be ventilated, medicated and paralysed. He let out a tiny cry and Michael went with them as they prepared him to be moved to the neonatal intensive care unit next door. Michael saw James’ eyes open, but I didn’t see him.”
An hour later Michael and Beth were allowed to go and visit their baby. “He was lying there, with what appeared to be a thousand tubes around him. He looked so small and helpless and I wanted so very much to lift him out of his incubator and cuddle him. I was having to fight against every natural maternal instinct, it was incredibly hard.” Beth and Michael were told that James had responded well to the initial ventilation and were advised to get some rest and come back in the morning.
Over the following days James made good progress, and the specialists decided to repair his hernia on day three of his life. “It’s very rare for this to be done so early – normally babies aren’t stable enough to operate on until at least day seven. The moment we said goodbye to James before his theatre was the hardest of our lives.”
During the operation the doctors discovered that James’s stomach, spleen, large intestine and small intestine were all in his chest. But they were able to repair him, and he was returned to the neonatal unit. “The next 24 hours were awful – James needed a blood infusion and looked extremely pale and poorly.”
James stayed in hospital for a month, and, although his progress was good, it was a tough time for his parents. “It was a total roller coaster, James seemed to take two steps forward and one step back. Although he appeared relaxed, stable and on the mend we had to remind ourselves that he was still in the intensive care unit. We would sit with him for twelve hours a day, we took care of his nappies and feeding him through a tube – we loved being in charge of these tasks, because it was the closest we’d come to being parents.”
Beth worked hard to establish breast feeding, “I adored it – at last it felt like my baby boy needed me.”
“The days were long and slow but we were grateful for every minute because our little miracle was fighting so very hard and he was with us. Michael was my rock during this time, he cared for me so wonderfully and we held each other’s hand through it all. We also got to know some of the other parents and nurses very well, as well as the ladies from the M&S coffee shop!”
James was allowed to go home on the 8th of July. “We were elated the day we left the hospital with our baby boy. Words couldn’t express our joy – it was the first time we’d allowed ourselves to believe that James was here to stay, our baby boy had lived! The journey home was surreal – we were checking on James every three seconds, staring at this little miracle in the car seat.”
Initially the family stayed with Beth’s mother. “She was able to reassure us and check James if we had any questions. Her help and support was invaluable.” At first James struggled to put on weight, but he was prescribed a high calorie milk and soon blossomed.
Three months on, and James is doing well. “We still pinch ourselves. To see him you would never imagine what he’s been through. He’s a normal four month old now, with a beautiful and boisterous character. He’s been signed off by the surgeons and just needs an annual check of his lung development. He may have decreased lung function for a few years, but by the age of seven there will be no difference between him and any other child.”
Michael and Beth are keen to help other parents and babies by raising awareness of CDH. “It’s more common than spina bifida, but it isn’t very well known and it has very little funding for medical research. CDH needs more time, money and energy put in to its research.”