We had no idea Kim was already pregnant when we set off on our dream holiday to Cape Verde last January. We were also totally unaware of the dangers that travelling to a country where the Zika virus is present could have on our unborn baby. It was only when we got back home and found out we were having Lottie that we began to worry. We had unknowingly put her life at risk. Fortunately, Kim seemed absolutely fine and blood tests taken by our local doctor didn’t detect any abnormalities.
However, although there was no signs of the Zika virus at our 12 week scan, the sonographer did discover a lot of amniotic fluid surrounding our baby. They couldn’t see anything wrong with Lottie and we were told it was probably nothing, but to come back six weeks later for our second ultrasound. It was at this scan that Lottie was diagnosed with duodenal atresia, which meant that the first portion of her small intestine was closed. We were told she would need lifesaving surgery at a specialist paediatric hospital, far away from our home in Matlock, just hours after she was born.
It was a surreal experience to visit Sheffield Children’s Hospital a few weeks later. As we were shown around the neonatal intensive care unit (NICU), we tried to familiarise ourselves with the place we were going to be spending the first few weeks of our daughter’s life. It was important for us to know where Lottie would be operated on and meet the team who would be looking after her. We also learnt about The Sick Children’s Trust during our first visit to Sheffield and that the charity ran free ‘Home from Home’ accommodation across the country, supporting families with seriously ill children being treated in hospital. We just hoped that, when the time came, we would be able to stay in Magnolia House, one of two ‘Homes from Home’ in Sheffield, located just minutes from NICU.
Things didn’t go exactly to plan when Kim went into labour at 34 weeks. Her waters broke in the middle of the night. Panicked, we rushed to the Jessop’s Wing at Royal Hallamshire Hospital where she was due to give birth. When Lottie’s heart rate began to drop with each new contraction Kim had to undergo a grade one emergency caesarean. Within five minutes Lottie arrived.
Fortunately, Lottie stabilised and was well enough to be transferred over to Sheffield Children’s Hospital. With Kim recovering in Jessop’s, I watched our baby being wheeled into surgery at just eight hours old. What the surgeon had thought would be an operation to open-up the closed part of her duodenum became much more complicated when multiple atresias were discovered, as well as a complete disconnect between Lottie’s stomach and intestine. At just 4lb 7oz she was too small to survive such a long and complicated operation and so the surgeon created an opening on the surface of her abdomen through which she could be fed directly into the middle part of her small intestine.
“Whilst Lottie grew stronger and was prepared for the operation that would save her life, Magnolia House became our home. I don’t think people understand that during times like this it is the proximity to the ward that makes all the difference.”
At this point we knew our stay in hospital was going to be a lot longer than we had bargained for. Kim was in considerable pain following the emergency caesarean and, once she had been discharged, there was no way she could manage the three-hour round trip to and from our home every day. Fortunately, there was a room in Magnolia House available for us and we were able to move in straight away. I don’t think either of us could have imagined leaving Lottie alone on NICU and travelling back home. Even being two minutes away from her was hard enough. She was so tiny and looked so vulnerable hooked up to monitors and with wires going into her tiny body. Because of issues with feeding she had to be transferred onto total parenteral nutrition (TPN), which meant all her nutritional needs were delivered directly into a vein in her head via a long line, bypassing her digestive system altogether.
Whilst Lottie grew stronger and was prepared for the operation that would save her life, Magnolia House became our home. I don’t think people understand that during times like this it is the proximity to the ward that makes all the difference. Both Kim and I were always there which meant we were able to create essential attachments and bond with Lottie, even though we were in hospital. And, when the distress of not being able to hold our baby got too much, we could at least touch Lottie so that she knew we were there. Afterwards, we would go back to Magnolia House and find solace talking to other families with babies too poorly to cuddle who understood how we were feeling.
During our time in Sheffield, if we needed anything at all or just wanted to talk about what was going on we knew we could speak to the staff at Magnolia House. The team were great at providing you with a little bit of comfort, but Magnolia House generally was that. Comfort. Normality. Plus, when our immediate family visited, we spent time with them in Magnolia House because only two people were allowed on NICU with Lottie at any time.
Lottie underwent the corrective surgery at just over six weeks old. It was a very tense day and we were beside ourselves with worry. In fact, it was the only time we drove back to Matlock that whole time Lottie was in hospital because we just needed something to do. She was in theatre for seven hours and had seven duodenal atresias repaired or unblocked and underwent stoma reversal surgery. Luckily, we didn’t find all of this out until after the operation, nor did we know that Lottie’s surgeon had to remove so much of her intestine she now only has 63cm left – the average length for a baby is 200cm!
Amazingly, since her operation, Lottie has thrived and, although she is still on seven different types of medication and medicated milk, her feeds went up so quickly in hospital that we have already made it back home. Both Kim and I know that a key factor in being discharged so soon after her operation has been because we were staying in Magnolia House. It meant we were able to learn how to administer the different medications and care for her. Without the help of The Sick Children’s Trust it would have taken us a lot longer to get to grips with her care package, as we would have had to travel to and from Matlock to the hospital every day.
Being home as a family in time for Christmas is the best feeling in the world and we are so proud of how well Lottie has done. After everything we have been through, it will be a very relaxed time for us and we plan on spending quality time together as a family. On Christmas Day we will visit both our families and I am sure there will be lots of presents. We can’t wait to introduce Lottie to all our family and friends who haven’t met our little miracle yet!
Jamie Mumby, Lottie’s dad.
