We could be a family in those precious first weeks
Edie Bea was a long time coming. We were so excited when we found out I was pregnant and began dreaming of our future together.
At our 20 week scan we found out there was an issue with our daughter’s kidneys. The next six weeks were harrowing for us. We were referred to the Feto Maternal Unit at Jessops and following a further scan and MRI, were told the pregnancy may not progress or the best we could hope for would be a very poorly baby. We had waited so long for this and the thought was too much to bear. We were seen at Sheffield Children’s Hospital when I was almost 26 weeks by the ‘top man’, Professor and Consultant Paediatric Urologist, Mr Godbole. We were told that the appointment would help us to understand Edie’s prognosis and at this time were told to prepare to discuss whether we would be continuing with the pregnancy. Although impossible to predict, we were informed worse case would mean Edie requiring kidney replacement therapy and transplant and also that during pregnancy the lungs may not develop as they should (the main concern of previous consultants). We had hope, get our baby girl here and they would do whatever was needed. We continued with the pregnancy and remained closely monitored for the level of amniotic fluid which remained normal. Despite a caesarean section being booked, Edie had other ideas, arriving naturally on 15 July 2019 at 38 weeks, weighing 7lbs 11oz.
Edie was in Intensive Care at Jessop’s while I remained on the maternity ward and Brian slept on the floor. Two days later, Edie was transferred to Sheffield Children’s Hospital when a bed became available on the Neonatal Surgical Unit (NSU).
Hydronephrosis (dilation of the kidney) occurs in around 1% of babies, though for Edie it was more complex. She was diagnosed with bilateral hydronephrosis, duplex kidney systems, dilated ureters and renal damage. Despite knowing this, we didn’t really know what to expect after Edie arrived. All we knew was that she needed to be at Sheffield Children’s Hospital for as long as she needed their care. We would do whatever it would take to be with our baby on every step of her journey. We didn’t know how long we’d be in hospital and we were a long way from home. We live in Doncaster and the traffic to Sheffield is awful, taking over an hour and a half in rush hour, not to mention the parking!
On the NSU there is one comfy chair by every baby and visitors strictly and understandably limited to two. Trying to figure out how it was all going to work was a nightmare. Bri would have to drive us in every day, setting off before 7 to beat the traffic and make sure we were present for consultant rounds. The thought of leaving my precious first baby was too much. I’d just stay by her whatever. My mum would do our laundry to make sure we had clean clothes, Bri would deal with parking, we would live on meal deals and coffee and that was how it would be as we started family life. I was worrying about all these little things that really shouldn’t matter when your baby is in hospital. That is unless someone else swoops in to take care of it for you.
Fortunately for us, someone did. The Sick Children’s Trust is the charity that gives families with a seriously ill child in hospital a place to stay close to their bedside. When we arrived on NSU, we were told about Treetop House run by The Sick Children’s Trust. It was on the top floor of the hospital and somewhere Bri and I could go to shower, eat and try our best to sleep. We could hardly believe it. We never knew this charity existed and were so overwhelmed by the help we were receiving, not just practically but emotionally from their amazing team. The uncertainty, concern and worry that I’d been experiencing was dealt with by The Sick Children’s Trust. I would not have to leave my new, poorly baby.
The following morning we were told a room was available at Magnolia House, another ‘Home from Home’ run by The Sick Children’s Trust. I was worried, we were so lucky to be close to Edie at Treetop House but Magnolia House was even closer to her. It was at the end of the NSU corridor (closer than the nearest toilet!). If we’d not been able to stop there I don’t know what we would’ve done. Bri and I soon fell into a routine of tag-teaming, he’d be with Edie while I went to get a shower, have a cup of tea or do the laundry and then we’d swap. It was great as it meant that both of us could be hands-on in Edie’s care and also allowed for grandparents to come to visit as we could take them to the communal areas to wait and have a drink whilst one of us would take them onto the ward to see Edie. We were still a family. If The Sick Children’s Trust hadn’t been there, we wouldn’t have been able to start Edie’s life as a family of three. The Sick Children’s Trust gave us the chance to be a family and wake up and be with our child, no matter what time. There were days where I couldn’t sleep and in the early hours I could get up and go sit next to my little girl. I wasn’t driving down the motorway – I was spending that precious time with Edie.
For 11 days we were supported by The Sick Children’s Trust and it was the next best thing to home. Bri and I found it really helpful to talk to other families staying at Magnolia House. Speaking to other parents helped us to take care of ourselves and appreciate every moment with Edie even though we were not at home. Magnolia House gave us a place that was comfortable, away from all the alarms and hustle and bustle of the ward to accept what the future may hold for Edie. Even though we knew Edie would be in hospital after she was born, nothing quite prepares you for the reality of it. The support of the staff in the houses was priceless to both of us. The ladies that work in Magnolia House are incredible. In the first few days, Ann picked me up when I was heartbroken, exhausted, recovering from birth and feeling really anxious.
It’s so easy to focus on what might happen and all the uncertainty that the future holds rather than focusing on the fact you have a baby to enjoy so many new things with. We’re back home and making the most of every, single day with Edie and are looking forward to getting her christened in December. She remains under the fantastic care of Sheffield Children’s Hospital.
You don’t ever think you’ll be the one needing to use a charity. We’d never heard of The Sick Children’s Trust before Edie was born, yet it is so obvious why the charity exists. Without it, a terrible time would’ve been unbearable. Until you’re actually in that situation you have no idea what you need. I have been telling everyone about the charity and the difference it made to us. I’d encourage anyone who can donate to do so. When we were told about the support the charity could give us, it was almost too good to be true. There were so many poorly babies that I was worried we’d have to leave. Not once did we have to and it was one less thing to worry about. Because of The Sick Children’s Trust we were able to experience all the things you should be able to experience with your newborn.
As we look forward to celebrating our first Christmas with Edie, we’re thinking about the families who will be having their baby’s first Christmas in hospital. Though, with the support of The Sick Children’s Trust they will be able to wake up and be with their child on that special day.
Lucas and Leo were born eight weeks premature on Christmas Day. Lucas later needed further treatment when he was struggling with his breathing and needed specialist care. Acorn House made sure the family were always together.
Every year we help families by giving them somewhere to stay near their seriously ill child’s hospital bedside. Sign up to receive our email newsletters to stay up to date with how your support is helping to keep families together.