My son was born 16 weeks premature; Crawford House kept us together for three months

Jack was born 16 weeks premature and needed specialist treatment in Newcastle. Crawford House supported his parents, Jessica and Dean, with a place to stay so they could always be by his side. They're sharing their experience as part of World Prematurity Day.

Our son Jack arrived 16 weeks early at a gestation of 24 weeks and three days at Sunderland Royal Hospital. He was tiny, weighing only 1lb 7oz. We could only spend a matter of seconds with him when he was born, before the neonatal staff had to take him to intensive care.

Being so premature, Jack was placed into an incubator and given round the clock care. Jack’s dad, Dean Hylton, and I went to see how Jack was doing soon after he was born, but didn’t get to hold him until he was a week old. It was truly the longest week of my life, and the feeling of finally cuddling my baby was both overwhelming and indescribable.

When Jack was about a month old, he developed a hernia in his left leg. The medical team informed us that he needed a specialist operation at Newcastle’s Royal Victoria Infirmary. As we made the 17-mile journey to Newcastle we were told about The Sick Children’s Trust charity and its ‘Home from Home’ called Crawford House. I didn’t really know what to expect, but after Jack was settled, members of The Sick Children’s Trust and the neonatal charity Tiny Lives came to welcome us. They told us we had a place to stay completely free of charge at Crawford House as well as having access to therapy from Tiny Lives.

I can’t put into words the amount of relief I felt at hearing this. Without the support of The Sick Children’s Trust, visiting our son would have taken hours of travel time and the costs would have been more than we could manage. Thanks to Crawford House it was one thing we didn’t have to worry about, with the ‘Home from Home’ located just minutes away from the hospital.

“The support of Crawford House was so important to help us with our worries and fears while making sure we were always by Jack’s side. I was able to be more hands on and present for Jack’s care, making me feel more like his mother instead of a bystander.”

As Jack was recovering from his surgery he was also diagnosed with Retinopathy of Prematurity (ROP), an eye disease that can happen in premature babies. It causes abnormal blood vessels to grow in the retina and can lead to blindness, with Jack needing laser eye surgery to correct the condition. It felt like one thing after another with each diagnosis, and I was scared to celebrate any wins he did have for fear of what else may be around the corner.

It’s a scary sight to see your baby covered in tubes and wires, with a machine breathing for him and another giving him fluids. As a first-time parent, having my baby in the neonatal intensive care unit (NICU) was really hard to process, especially when leaving the hospital at the end of every day without my son. All I wanted was to have him home with me, living out the fantasy I had built in my head from the day we found out I was pregnant. Unfortunately, we had to come to terms with the fact that in our case, and for many others, it would be a long journey before we got home. We could only bring ourselves comfort by knowing our baby was in the right place with the best babysitters in the universe.

With Jack remaining on the NICU for three months, we found that the most difficult part of our hospital journey was the uncertainty, particularly in the early days. We weren’t certain our baby was going to survive from one day to the next. We were terrified that we’d go to visit him one day and be given the worst kind of news. Signing the documents to give parental permission for his surgeries and having to acknowledge that he may not survive them was absolutely heart wrenching. It was a constant reminder of the severity of Jack’s health.

That is why the support of Crawford House and Tiny Lives was so important to help us with our worries and fears while making sure we were always by Jack’s side. With Crawford House being on the hospital site I could be with Jack at any time day or night. I was able to be more hands on and present for Jack’s care, making me feel more like his mother instead of a bystander. That support provided by The Sick Children’s Trust is truly invaluable.

Since leaving hospital Jack has been doing incredibly well. With his recent growth spurts, we can comfortably say he is living the life of a regular baby. With some luck, there should be no more hospital stays in our future. He does need annual eye checks to ensure the treatment for his ROP is working, but so far we’ve been given the best signs. We will be forever grateful to the doctors, nurses and specialists involved with Jack’s care and for the support we received from The Sick Children’s Trust and the team at Crawford House.

Jessica Shannon-Tunney, Jack Hylton’s mum

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