Nettie’s story

 

Ryan and Alice were both exited and very nervous when they found out that they were expecting their first child.   As the pregnancy progressed they started to relax and enjoy the experience but then at 32 weeks, a  routine growth scan revealed a blockage in the baby’s small intestine.

The couple were refered to the feotal medicine unit where they were told that neither the cause of the blockage, or how serious it was, would be completely clear until the baby was born. What they were fairly certain of however, was that the baby would probably need an operation shortly after birth.

Over the next few weeks, the blockage started to cause an excess build up of fluid around the baby whci in turn started to effect the baby’s heart. So at 38 weeks, little Nettie was dilivered by caserian section.

Alice says: “Nettie only weighed 5lb 11oz which is pretty small for a full term baby. Since finding out there was a problem, we’d been really scared so we were very relieved that she was here and could be looked after. But we were only able to see her for an hour before she was taken away and the next time we saw her she was attached to all types of wires and alarms.  I think it was at that point that we realised how potentially serious this was.”

At three days old Nettie underwent an operation to clear the blockage which had caused her bowel to twist and stop growing. They removed part of her intestine and gave her a stoma but it prolapsed twice meaning that the doctors had no option but to operate again urgently.

Ryan says: “During the surgery they’d struggled to get access to Nettie’s veins so they’d inserted a line directly in to her heart through a hole in her neck. It was horrific seeing our tiny baby like that.  Even as she started to stablisise from the surgery, the whole process of Nettie’s care was constant and we were always in this state of high alert, worrying about what might happen next.  The lines that were inserted in to Nettie to medicate and feed her would only last a few days before her veins collapsed and they were very prone to infection so they kept having to be checked and moved. She also had to have a transfusion becaue she’d lost so much blood.”

While on the intensive care unit, Ryan formed a friendship with another dad, Jeff, whose baby daughter, Gabriella, was being treated for a condition called Gastroschisis.

“It’s very difficult to explain the neonatal ward experienced to someone who hasn’t been through it.  The days are very long and often very frightening and speaking with other parents who are on the same emotional plain as you is a great comfort. Jeff spent hours at his little daughter’s bedside as I spent hours at mine so we supported each other and sort of propped each other up.”

Jeff describes Ryan as a good man whose friendship pulled him through many a dark hour. He says: “Ryan’s from South Africa and he came up to me one day and offered me a spare ticket to the Wales v South Africa game. I didn’t want to be away from Gabriella but  Ryan convinced me that it would only be for a few hours and that it would be good for us both.  And it was. He even sorted it for me for Wales to win!”

Nettie spent eight weeks on the neonatal unit while Gabriella was finally released from hospital in May.

Although both Alice and Ryan were extremely excited about taking their daughter home for the first time, they also felt very anxious.

Ryan says: ”The drive home was nervewracking. For the first time Nettie was coming in to our world as opposed to us going in to hers. I don’t think either of us had realised how much we’d been focused on keeping ourselves together for Nettie while she was in hospital until we got home that day.  I Skyped my parents in South Africa so that they could see her for the first time and at that moment I just went to pieces.  Everything that we’d been through over the past few months just hit me all in one go.

Alice continues: “Nettie had been a patient since before she was even born so when we got home we had to almost re-train ourselves to see her as simply our baby. She still needed lots of medication and that was daunting at the beginning but the most important thing for us to focus on was forming a proper parental bond and learning for the first time to be her primary carers.  It’s something that most mums and dads fortunately take for granted but for us there’s been a big delay in starting that process.”

Alice and Ryan are both very pleased to hear about the family rooms that will be situated in the new neontal unit. Otherwise known as “rooming in” rooms they’re places where parents will be able to spend time with their babies in a home like environement in the lead up to going home.

Ryan says: “We love the idea of the family rooms because they’re like a half way house to going home. It’s a chance to get used to being alone and caring for your baby away from the clinical enviroment while also  having the security of knowing that the nurses are on hand should you need them.  It really helps to alieviate the anxieties of mums and dads who have already gone through so much.”

With their daughters now safely home, Ryan and Jeff will be taking part in the Cardiff Half Marathon together in October. They’ll be raising money for the Noah’s Ark Charity in celebration of Nettie and Gabriella and as a thank you for the care their families have received.