Help Jenson’s family, a medically complex baby!

In August 2024, we welcomed our first child (our rainbow baby) Jenson – a baby we had waited so long to meet.

Jenson came into the world in a dramatic way that should have been a clue to how he’d live his life. 11 days overdue I went in for a balloon, a simple 1 hour appointment I was expecting to leave and get pancakes after. However after around 20 minutes it became clear something wasn’t right, the babies heart rate was dropping and they couldn’t get it up. The BIG RED BUTTON was pressed and I was rushed to surgery. When I woke up an hour or so later there was my partner hold a tiny bundle. He was so emotional when he told me “we’ve a baby, it’s a boy!” I’ll never forget the moment I held him for the first time. He was our perfect baby, with lots of black hair and blue eyes, he was everything we could wish for. A few hours later when we were on the ward it became clear Jenson was struggling to breastfeed and bottles not going down well. A midwife calmly let us know they were just going to check on him and he’d be back in a few minutes. Little did we know that was the last of our little family being together in a postpartum blissful bubble. It was also the last time I would hold my baby for a long time. About 20 minutes later he was taken to the NICU, where I couldn’t follow as I was still on oxygen. Daddy went with him and I waited for them to come back. After a few hours I was taken in my bed to see him, when I arrived the scene was terrifying and overwhelming. There was my new baby in an incubator sedated, drugged and with a breathing tube. We were told he’d been struggling and this was the best thing for him.

Later we were told they would transfer him the the Paediatric Critical Care Unit where they could better assess and monitor him.

Jenson spent the next 3 weeks with a breathing tube, every time they attempted to remove it he would last 24-48 hours before his work of breathing would become too much and he’d need the tube reinserted.

When Jenson was just 3 weeks old he had to have an emergency operation for a tracheotomy. He is profoundly deaf (with hearing in one ear via a bone conductor), and is tube-fed. He will soon undergo another surgery for a gastrostomy.

His condition is classed as life-limiting, with around 30% of affected children not reaching their fifth birthday.

Despite all this, Jenson is a bright, happy, and engaged little boy – and we are immensely proud of his strength. Everyday he enriches our lives. He’s full of smiles through everything he has gone through and continues to go through. Although he still loves to be dramatic and give us health scares every so often.

When planning to return to work I started looking at childcare options.

The reality is I am currently unable to return to work, no matter how much I want to and will continue to try to. Jenson needs specialist care which private nursery can’t provide and the council run nurseries have rejected him for being “too medically fragile”. Is round the clock needs can be intense so we are unable to leave him with anyone who’s not specifically tracheotomy training, knows sign language and would be 1-2-1 with Jenson, a big ask for anyone.

Our focus is entirely on Jenson but we still need a little help.

Jenson’s hospital stays, travelling to appointments and a lot of medical equipment needed for life saving/quality of life has meant a big increase in bills and financial burden on us.

We want to give Jenson as close to a normal life as possible, letting him experience everything he can that his peers do.

We are sharing the most personal details of our lives so publicly and this feels uncomfortable for us but we will never stop anything to help Jenson

We want to thank everyone for any support they can give. No matter how small it makes a huge difference to us!