I could do all the practical things to help while Jasmine was being looked after
It was at the height of the global pandemic that my wife, Lana, and I were told that we were having a little baby girl – and that our little girl would be born with spina bifida.
I wasn’t there when Lana was told the news due to the government restrictions, I was in the park with my son, Dylan, when I got the call from the sonographer. All I heard was ‘abnormalities on the brain and spine’. Ever since then it has been an emotional rollercoaster having to deal with the uncertainty around our daughter and the worry about the pandemic.
It was planned that Jasmine would be born at Addenbrooke’s Hospital in Cambridge so that she could have a major operation at just a few days old. The hospital is one of a few that can perform this specialist surgery and is about a two hour drive from our home in Norwich. I didn’t think it was too far a drive, but with COVID I was unsure about what would happen and worried that every day she was in hospital I would be driving back and forth to spend time with her and Lana.
Jasmine has a form of spina bifida known as myelomeningocele, which means when she was born the neural tissue was exposed on her back because her neural tube had failed to close. The tissue looked like a sac on the base of the spine. Jasmine’s was the size of a cricket ball.
When she was born, we held our breath as we waited to hear her cry. When she did she was given oxygen and taken to the Neonatal Intensive Care Unit (NICU).
Over the next couple of days, I could only see Lana for short periods of time and waited for news about Jasmine. The restrictions made it really hard for us at times. English is Lana’s second language and when I couldn’t be there at the meetings with doctors, things were missed. Not only that, but the doctors have to give you the full picture and for Jasmine it was grim. It was so important for us to find a way to be together. Even on the day of her surgery, I couldn’t be there. For three hours I had to distract myself.
After a few days of spending hours waiting by vending machines, and wandering around Cambridge Lana was about to be discharged from hospital. This is when we were told about The Sick Children’s Trust’s ‘Home from Home’ Chestnut House. We were handed keys to a place that both of us could stay and be together while Jasmine recovered from her operation.
We would’ve had to get a hotel without Chestnut House – it would’ve cost thousands of pounds. If we didn’t get a hotel, I would’ve driven every day and that just wouldn’t have been good. All you want is to be there and to find out we could be there because of a charity… I was really touched.
Last August, restrictions had eased somewhat but the hospital was still just allowing two parents onto NICU at a time. So in the morning I would phone up from the room in Chestnut House and ask whether we could come up. We were just a couple of floors below which meant that it was easy, This was especially important when we got a phone call to say Jasmine had woken up and was hungry as Lana could just walk up the stairs to feed her. Although we could only be there for four hours on any day, we knew we weren’t far away which was a relief.
I felt like I couldn’t do much for Jasmine but Chestnut House made me feel like I could do something. I could be there to do the laundry and get the food and do all the practical things to help. I was also there to give emotional support to Lana.
Jasmine is now eight months old and is developing well. Due to the spina bifida her head is measured regularly to make sure cerebral fluid isn’t leaking into her brain and causing it to swell. We thought she was going to have a shunt inserted, to drain the fluid, but this hasn’t happened. She is a happy little girl but complications can come at any time which is a concern.
This last year has been a worry, from the news at the scan, the pandemic, the birth to now. Every day is a blessing though. We know it could’ve been a lot worse and want to thank all those that helped us and continue to. When normality resumes I would love to do some fundraising for The Sick Children’s Trust as it really helped me be there for my family when they needed me. It also made me feel I could help at a time I felt like I couldn’t.
During a 16 week scan Lily and Ashley found out their daughter, Ruby's, kidneys were dilated which made it unlikely she would survive. Chestnut House kept them together while she received specialist treatment.
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