In 2017 I went into labour 16 weeks early and gave birth to our first son Tobias who weighed just 600g. Two days prior to his birth were rushed to Leeds Children’s Hospital from Halifax after my water broke at just 23 weeks. After he was born, he was whisked away immediately as he couldn’t breathe on his own and needed to be put in an incubator. Tobias had several health problems from birth that affect a lot of premature babies due to their small size and shorter time developing, he had to be tube fed, given a lot of antibiotics and round the clock care.
At five days old Tobias developed an infection in his bowel which caused it to perforate and needed surgery to remove the infected part. While we thought this had been successful just 12 hours later he deteriorated and was diagnosed with a secondary infection and sepsis. His blood pressure was incredibly low despite being on a lot of medication to try and stabilise his condition it just kept getting worse. Tobias’ heart rate was also very slow throughout all of this which later caused him to suffer a cardiac arrest. It took the doctors a couple of minutes to revive him, but due to Tobias’ extreme prematurity and everything his tiny body had already had to go through, we were told the devastating news that there was nothing more the doctors could do for him. At just eight days old we made the decision to turn Tobias’ life support off. This was the first time we got to hold him, as he passed away in our arms.
During this incredibly difficult time we were given a place to stay by The Sick Children’s Trust at its ‘Home from Home’ Eckersley House which is just a short walk away from the hospital. The majority of the time my partner Edward and I were able to be with Tobias on the Neonatal Intensive Care Unit (NICU) at Leeds, but thanks to this amazing charity we always had a place where we could go back to sleep and recharge before returning to ward. With Tobias’ health in so much turmoil it was so important for us to be that close so that we could get back to him in an instant. We never wanted to leave his side, but the nurses reminded us that we needed to take a break and rest ourselves. Without Eckersley House this wouldn’t have been possible. I would have been constantly worrying if we were back home in Halifax, 45 minutes away from our baby. Thankfully Eckersley House took all that extra worry away.
Having the support from the other families who were going through a similar situation to us also helped so much. To be able to speak with someone who understood the fears and worries you experience made the whole situation a little bit easier. After Tobias passed away we soon left the ‘Home from Home’ so that another family could benefit from it, but we were so incredibly grateful for all the support we had received while we were there.
“I would have been constantly worrying if we were back home in Halifax, 45 minutes away from our baby. Thankfully Eckersley House took all that extra worry away.”
Little did we know that a year later we would be back staying at Eckersley House when our second son Sebastian was also born premature at 25 weeks, three days.
We were thrilled to be expecting again but considering everything we had been through with Tobias of course there were those extra fears and worries. We got a lot more support from the consultants and I was monitored closely throughout my pregnancy. Despite this however Sebastian was also born premature, in 2018 weighing 670g. We were back at Leeds Children’s Hospital with the same doctors and nurses which was a comfort as they remembered us from before and were fully aware of our situation. The biggest difference however was that Sebastian was born by caesarean which was a much more dramatic birth compared to Tobias’. Sebastian was struggling to breathe on his own and needed to be ventilated straight away as well as needing antibiotics and a feeding tube.
Edward and I were living through the same nightmare all over again. As much as I tried to push the thought from my head I couldn’t help but think we were going to lose Sebastian too. It was an incredibly hard situation to go through again as Sebastian had all the same premature health worries that Tobias had.
Sebastian however didn’t develop any major infections and continued to do well while on NICU and while I was recovering, we were told that we had a room at Eckersley House. It was such a relief to know that we would be able to stay so close to the hospital and our baby again. It was a great reassurance to be back somewhere familiar. All of the staff remembered us as well and we spent a lot of time speaking with the House Manager, Jane, who was such a great support.
We were in Leeds for eight weeks while Sebastian continued to receive treatment and once we were settled in, Eckersley House really did become a ‘Home from Home’ for us. I stayed at the house full time, with my mum and Edward alternating their stays as he still had to work. Our eldest son Thomas and my step-daughter Eleanor could also come and stay at the house from time to time too and it was lovely to be able to stay as a family as much as possible. It was so difficult throughout Sebastian’s time in hospital, but it was so nice for us to have somewhere to go to away from the ward where the kids could play, while we had a safe space to process everything. It was a great comfort to know Eckersley House was there when we needed a break and a nice comfy bed to get some rest.
After those first eight weeks Sebastian’s health had improved enough that he was transferred back to our local hospital in Halifax and we left Eckersley House. He spent another ten weeks in hospital between Halifax and Leeds before we went home. Sebastian needed a few surgeries and procedures to close a hole in his heart and also on his eyes as he had developed a condition where the blood vessels in his eyes developed abnormally, and eventually caused his retinas to detach. He also needed to put on enough weight so that he could stop being tube fed. We are still having his eyesight checked to determine the extent of the damage caused, we know he has lost some vision particularly in his right eye and he did have some feeding issues while at home, but these have improved now. It felt really different being back at home and in our local hospital. I had only been home a handful of times while Sebastian was in Leeds and only for an hour or two. Even though we only live about ten minutes from our local hospital it was really strange not being as close as we were in Leeds. The first week or so I kept ringing to check he was ok as I knew I couldn’t get back to him as quickly as when I was in Eckersley House.
“It was a great reassurance to be back somewhere familiar. All of the staff remembered us as well and we spent a lot of time speaking with the House Manager, Jane, who was such a great support.”
It was the same when we finally brought him home. Everything was so much quieter without the busyness of the hospital and it took me a while to get back into normal life. It made me realise just how important Eckersley House was for us as there were times when we got calls in the middle of the night when both Tobias and Sebastian were in hospital because there had been a change in their condition so we needed to be with them quickly. In a few minutes we could be back by their side. Without The Sick Children’s Trust’s ‘Home from Home’ I really don’t know what we would have done. If we were at home there’s just no way we would have got to them in time. We can’t thank the charity enough.
We’re still having lots of follow up appointments with Sebastian and he is still behind in his development due to his prematurity, but none of this is a serious concern to his health. He is such a happy, little two and half year old and he is doing really well. We so incredibly proud of him.
Lucy Vickerman, Tobias and Sebastian’s mum
