Something a bit different today… I am sharing the story of 8-month-old Holly; the brave daughter of very close friends of ours. Her Mummy Nikki wants to share Holly’s story to encourage parents to always trust their instincts when it comes to the health of their children.
And on that note, I will hand over to Nikki…
As I sit next to Holly’s hospital bed, watching her sleep after her second operation in eight days, I am wondering how we ended up here. I’m grateful that the doctors have finally discovered what is wrong with her, but I’m racked with guilt and I’m asking myself a million questions. Is it my fault because we had building work done when I was pregnant? Was it the antibiotics I took before I realised I was pregnant? Should I have fought harder to get this discovered sooner? Could I have done anything different? The list goes on.
I had a feeling that something wasn’t right from the moment she was born. I have come to discover that a mother’s instinct is more powerful than any check-up, any doctor diagnosis, and any individual telling you ‘Don’t worry! Don’t panic! She’s fine!’ I knew something wasn’t right. I just knew.
Holly is my second daughter – and things felt different from the beginning. Holly never fed properly from birth or took enough milk. At 4 days old, she had her tongue tie cut and we hoped the feeding problem was solved. It wasn’t. At 6 weeks, the vomiting started. We could hear a strange clicking noise in her chest and her milk never seemed to digest properly. She always seemed to be uncomfortable, twisting and turning in bed all night.
As she got older, the feeling that something wasn’t right got stronger. I took her to the GP so often that the receptionist once commented ‘oh, it’s you again, you’ve been here a lot’. That comment was like a kick in the stomach. I knew something was wrong.
Our GP told me that Holly was fine over and over again. She was meeting milestones and she didn’t display any signs of a baby with major issues. I was unconvinced and started looking at other avenues. We visited at cranial osteopath, but after three visits (and £300 poorer), nothing had changed. We booked private consultations that cost £250 a pop, but still the conclusion came that she was fine.
I resorted to taking her to A&E in desperate attempts to find out what was wrong – and finally, on the third visit, they gave her an X-Ray and diagnosed pneumonia. After a course of antibiotics, she seemed to improve – but she was still only able to take 3 or 4oz as a feed.
The moment that will stick in my mind forever came six weeks later. After a follow-up X-Ray to check the pneumonia had cleared up, I was told to immediately rush Holly to A&E. They had spotted a lump on her lung – but being a Friday, we would have to wait until Monday to find out what it was. All they could tell me is that whatever it was, it had grown. That weekend was horrendous. We were sick with worry.
After a CT scan on the Monday morning, consultants sat us down and told us that Holly had Diaphragmatic Hernia. It meant her guts were above her diaphragm as it hadn’t formed properly. She needed a major operation.
We listened as they told us that 1 in 2500 babies have a diaphragmatic hernia, which is congenital and forms in the first 7-10 weeks in the womb. This is why it is usually discovered at the 20-week scan – but those babies that aren’t detected in the womb are normally detected at birth, because the child’s lung usually hasn’t had a chance to develop properly and breathing can be a real problem without assistance.
After doing some research on google afterwards, I went cold when I read that the mortality rate is about 30%, with a significant amount suffering from serious health problems. Only about 10% of babies get to Holly’s age without the problem being spotted. In many ways, we had been lucky – but it didn’t feel like that as we got our tiny baby ready for major surgery.
My instinct had been right all along.
Three weeks later, we were handing our 7-month old daughter to the surgeons to be operated on. Watching her go under general anaesthetic is a moment that will stay with me forever. Having to wait three hours to hear how the operation had gone and then walk into intensive care unit and see our baby on a ventilator was torture.
Despite everything, we were relieved she was getting better – until that is, the doctors broke it to us that a routine X-Ray had found that there was another major problem. Holly also had Hiatus Hernia, which is very rare in babies. Her stomach was in fact in her chest area. None of the medical team could believe that she had two very rare conditions – they had never come across it before. We steeled ourselves for another major operation a week later.
As we handed her to the surgical team for a second time, we felt emotionally drained. And as I sat by her hospital bed afterwards, I felt the need to write down my story to urge other parents to trust their instincts when it comes to their children’s health. And although every inch of my being wishes I had been proved wrong, I am so relieved that I kept pushing for a diagnosis.
Doctors do an amazing job, but they need to listen more to Mums when they tell them there is something wrong. We are the ones that are with our babies day in and day out – and if we feel something isn’t right, it probably isn’t.
Where would we be now if I hadn’t trusted my instincts?