My beautiful baby boy Jacob entered the world on 4 July 2022, arriving nearly six weeks early by emergency caesarean section after my waters spontaneously broke. It had been a difficult pregnancy, especially in those days leading up to his arrival. The monitoring at our local hospital in Stevenage had showed greatly reduced movement, causing real concern for me and my wife, Tracey. Aside from being a little jaundiced, Jacob arrived in far better condition than expected, weighing 5lbs 8oz, which the doctors were happy with. We were utterly overjoyed at becoming first-time parents, but it was not long before everything changed.
Baby Jacob with mum Laura. Credit: Laura Stubley Down.
A few hours after arriving and while being monitored on the Neonatal Intensive Care Unit (NICU), which is normal for pre-term babies, Jacob’s body temperature began to rise. A routine blood test revealed an extremely high white blood cell count. To our horror, we were told he had possible congenital leukaemia, a rare blood cancer that develops in the womb and is seen in only one of every five million births. It was devastating news for us.
Jacob needed specialist care as soon as possible and was blue-lighted to Addenbrooke’s Hospital in Cambridge – nearly an hour and a half away from our home in Hertford in the early hours of 5 July. He was immediately placed into their Neonatal High Dependency Unit. As I was in-patient myself, still recovering from the c-section, it was his other mum who travelled with him to Addenbrooke’s. Having hardly seen him, it was horrible knowing he was going to be so far away from me. I knew Tracey would be with him and keep me up to speed, but all I could think was ‘my son’s got leukaemia’ and I wanted to be there.
The following day I was reunited with my baby boy when I was transferred to Addenbrooke’s, being an in-patient on the ward for three days, with Tracey sleeping in a chair next to my bed before I was eventually discharged. As an in-patient we could stay close to Jacob, but upon discharge we had nowhere to stay and panic set in. We were miles away from our home, but desperate to stay as close as possible to our poorly son, who was by this stage receiving my expressed breast milk.
It was at this point that The Sick Children’s Trust came to our rescue. We were given a place to stay at their Chestnut House ‘Home from Home’, which was located just two floors beneath the NICU where Jacob was being treated. It was a huge relief to have this clean, homely, and comfortable place to rest and shower, keeping us close to Jacob while also allowing us a moment to process everything that had happened in an exhausting, traumatic few days. It proved to be a short stay.
Credit: Laura Stubley Down
The following day, Jacob took a turn for the worse. With a significant amount of fluid surrounding his heart, Jacob was taken by ambulance to the cardiology specialists at Great Ormond Street Hospital (GOSH) in London for an emergency operation to drain the fluid, staying for five days before returning to Addenbrooke’s. With no rooms available at Chestnut House, we spent nine stressful days staying in a different location onsite before The Sick Children’s Trust once again came to our rescue. Going back to Chestnut House felt like heaven. We were so grateful to be back in such a wonderful place with a clean bed, a warm shower and even a kitchen to cook a meal when you eventually get sick of shop-bought sandwiches at the hospital. It meant we could properly look after ourselves while the hospital focussed on identifying what was wrong with our boy.
After various rounds of testing and many hours of discussion, that question was finally answered. Jacob has now been diagnosed with Transient Abnormal Myelopoiesis (TAM), a rare leukemic bone marrow disorder that usually only appears in newborns with Down’s Syndrome. Genetic tests showed that Jacob does not have Down’s Syndrome, making him only the 21st reported case of this kind anywhere in the world.
Baby Jacob with mums Laura and Tracey. Credit: Laura Stubley Down.
In total, Jacob had seven shots of chemotherapy and has had four blood transfusions, but it did the job and, in August, was finally allowed to come home with us. There is a long road ahead for him and there is always a chance it could return as full-blown leukaemia, but he is so full of life now. You wouldn’t know anything had happened. He’s a typical six-month old baby, teething and trying his first foods. He loves mashed parsnips but absolutely hates broccoli – he’s great at letting me know what he does and doesn’t like!
We will always be incredibly thankful for Chestnut House being there for us when we needed it most, keeping us close to Jacob. To say thank you, Tracey raised £150 for The Sick Children’s Trust in lieu of birthday gifts and my work colleagues at The Dog’s Trust charity did a Go Fund Me page after hearing our story, raising £635 which I know will help other families in similar situations to the one we faced. We hadn’t heard of this wonderful charity until we desperately needed them, and we cannot thank them enough for everything they did.
Laura Stubley Down, Jacob’s mum
A very happy Jacob! Credit: Laura Stubley Down