‘I was in shock and unsure how to act’ Mum who struggled with her premature son’s illness shares heartwarming advice for other parents

  • We earn a commission for products purchased through some links in this article.
  • Every time Kate Tuckwell's little boy, William, smiles at her she feels like the luckiest mum, but it's a world away from the pure fear she experienced when her son was born. In this article she reveals the sense of helplessness she felt as doctors swooped around him in his incubator in intensive care.

    Shortly after I became pregnant in 2017, my husband Nick, then 39, and I discovered there was chance our baby could be affected by Treacher Collins syndrome (TCS), a condition that affects the bones and tissues in the face, seen in the film Wonder.

    The cheekbones, jaw and eye sockets don’t develop properly during pregnancy, causing facial deformity. It’s genetic, and it’d emerged there was a history of if it in Nick’s side of the family. By then we’d already had our healthy little girl, Alex, then two, and at a 26-week scan, our baby showed no signs of TCS.

    We knew that didn’t guarantee he didn’t have it, so we tried to prepare ourselves, and I elected to have a caesarean at Royal United Hospital in Bath, to ensure there were paediatricians there in case he needed help breathing.

    Nick and I couldn’t wait to meet our boy, only, the moment William was born in January 2018, chaos erupted in theatre. We only saw him for a moment before he was whisked off to the Neonatal Intensive Care Unit (NICU), but I could see he had a severe form of TCS.

    William

    It was a whole, agonising day before I was finally able to see my baby, and looking into the incubator, my heart broke. Part of me had still hoped to see a healthy baby with rosy cheeks and wide eyes, yet William’s jaw was small and compromising his breathing, his eyes drooped downwards and he had no outer ears. Doctors couldn’t be sure if William could hear, swallow or even see, and he was transferred to St Michael’s Hospital in Bristol, for specialist care.

    ‘I can’t believe this is happening,’ I sobbed to Nick, overwhelmed. All I could do was stand back and watch as medical staff tended to William, and I found it so hard to be his mummy.

    When he was two weeks old, William had a tracheostomy tube fitted to help him breathe, which meant I was able to cuddle my boy for the first time. The love I felt was mixed with fear. What life would he have, would he have a future and could I cope? We spent our next three months inside the hospital while family helped out with Alex, then three, who luckily was too young to understand.

    Thankfully, we learned that William could see and hear – with hearing aids, and watching he and Alex meet was magical.

    Kate with daughter Alex and son William

    In April 2018, William finally came home, and while he’ll need surgery as he grows up, doctors are confident William will lead a normal life. When he was first born, I’d been in shock and unsure how to act, but he’s two, and thriving and when I see his happy face, it lights up my world.

    Working with charities like Bliss, who provide support for those with premature or sick children, I’m hoping I can help other parents. I know you may be really scared or feel out of control, but let the doctors do their job and focus on your family. All your baby needs is you.

    Visit bliss.org.uk

    The charity is one hand to offer help and support for families with premature or sick babies.