We were in the third hospital of the day and Esme was just 16 hours old. We’d travelled from Northallerton via Middlesbrough to Newcastle’s Freeman Hospital where we were waiting for a diagnosis for our daughter, knowing that she had an issue with her tiny heart.
My pregnancy had been fine and all the scans came back normal. As my due date approached, we were ready to welcome our little girl into the world. In the midst of lockdown, we knew to wait until the labour was well underway to ensure that Karl, my husband, could be there at the birth. We arrived at 7.15am on 7 May 2020 and 15 minutes later, Esme was born at Friarage Maternity Centre in Northallerton. Later that afternoon we were getting ready to take Esme home, to meet her older brother Lucas, when the midwives noticed her oxygen levels were low. The midwives provided amazing care and support and continued to monitor Esme and were the ones who noticed her oxygen levels continued to drop. My midwife accompanied me and Esme as we were sent to James Cook Hospital to have her heart and lungs scanned, which I am so grateful for. When they knew it was something to do with Esme’s heart were were sent to Newcastle’s Freeman Hospital.
“On the day our daughter was born, we were delivered the news she had a lifelong condition and we couldn’t stay together.”
By 1am we finally had the diagnosis. Esme has a rare heart condition called Ebstein’s anomaly where the valve which directs blood through the right side of the heart doesn’t work properly, the doctor told us it affects one in 10,000. On the day our daughter was born, we were delivered the news she had a lifelong condition and we couldn’t stay together. With the restrictions around coronavirus, after receiving this news Karl had to leave the hospital and drive all the way home while I could stay with Esme at her bedside. I was really concerned about Karl making the 1 hour 15 minute journey home, by himself, worrying about Esme and her heart but this was the reality we were facing until she was allowed home.
The following morning, while we waited for confirmation to see if Karl would be able to visit us we were relieved to be told that we were being given a room at Scott House run by The Sick Children’s Trust. Scott House was on the hospital grounds and meant that both me and Karl could be there with Esme. We couldn’t be together by her bedside, but at least one of us could always be there without the other being far away and it was equally important for both me and Karl to be able to spend time with our daughter.
Leaving your child in hospital is the hardest thing in the world, but the nurses encouraged us to leave her side to rest so that we would stay strong for Esme. It was the best advice. Scott House made this so much easier though as we only had to walk down a corridor to have an hour to ourselves and sleep in a quiet room, to only have a few minutes’ walk to be back at her side. We would take it in shifts between the hospital and Scott House, relaying the doctor’s information as we passed each, and ensuring we got to take part in the morning and night routines. We could feed her, change her and do all the things as parents you are meant to do for your child.
“Scott House was on the hospital grounds and meant that both me and Karl could be there with Esme. It was equally important for both me and Karl to be able to spend time with our daughter.”
The situation would’ve been difficult without the current pandemic, but the coronavirus restrictions really did make it ten times harder. We were grateful however that we could both be there and support each other as much as possible and not face this alone. With the support of The Sick Children’s Trust, we were there for each other and didn’t have to worry about how the other one was doing, we didn’t have to worry about driving to and from the hospital, we could just worry about Esme.
Another charity, CHUF, gave us meal vouchers. Without those vouchers, we would’ve probably gone without. Instead, we ate regularly throughout the day which really made a difference to our wellbeing.
Esme was given medication to prevent further issues with her heart, and give it a chance to grow. Despite having a turn for the worst initially, she responded well to medication which meant she didn’t need to have an operation. Going forward, Esme will be monitored and her heart will be given a chance to grow before any operations are scheduled. It’s a waiting game, but we are confident in the amazing medical staff that are looking after our daughter.
Esme might never need an operation, but then again she might. No parent should have to go through what we went through without the support from charities like The Sick Children’s Trust and CHUF. While we were at Freeman Hospital, we set up a fundraising page for The Sick Children’s Trust and CHUF which has raised £1,800. All our family and friends know the difference the charities have made to us and have kindly shown their support during these uncertain times. We know that fundraising is hard at the moment and also know that anything helps.
Stacey Hamlyn, Esme and Lucas’ mum
