Welcome to our new guest blogger – Grace Brown. Grace’s youngest daughter, Honey, is 3 months old and is awaiting heart surgery for a congenital heart defect. Grace will be telling her family’s story over the next few weeks – here she gives us the background to Honey’s condition:
Honey was born in North Devon Hospital on 30th October 2014 by C-section.
My 20 week scan appeared to be normal – the sonographer said she couldn’t see the fourth heart chamber very well, so asked us to go for a walk. When we came back she said the image still wasn’t brilliant, but adequate enough, and that she was happy to sign it off. As she was our third baby after two previous healthy children – I didn’t think anything would be wrong.
At 34 weeks pregnant, it was identified that she was too small for her age. They rescanned – although not her heart – just the flow in and around the placenta and her heart blood flow. Again, no obvious reason for her small size. During weekly observations at the hospital, Honey’s heart rate seemed to be fairly normal. They said she would have ‘funny five minutes’ occasionally, where her pulse rate would suddenly go very high, but they were happy not to act on it.
When Honey was born, I heard her cry and my husband vividly saying “Oh my god. She is tiny.” And she was. 5.5lbs – very different to her bouncing 9lb siblings!
I asked if they needed to take her to the special care – they said no and that she didn’t even need oxygen. Her newborn heart rate checks didn’t lead to any concerns either – although her heart was racing, the doctors assumed it was the result of a crying fit. After a night of testing her blood sugars, we were discharged.
That was the start of a very long journey to now, 13 weeks later.
At home, Honey was very sleepy, which for a small baby sounds fairly normal but, to me, was unsettling. She rarely cried. The fact that it was extremely hard to rouse her for a bottle was also concerning. She was always snuffling – odd breathing noises in the night, not laboured, but loud. She had permanently cold hands and feet and would scream blue murder if she was bathed or changed. She hated being chilly in the slightest way.
I raised this with the health visitor and she didn’t seem concerned. She asked if Honey was feeding, producing wet and dirty nappies – which she was, and said it was fine. Even when I went to a drop-in clinic to have her weighed at 6 weeks, and she hadn’t gained any weight, there seemed to be little cause for concern (despite my own mounting worry). I’ve since found out that Health Visitors should make a referral to a paediatric unit if a baby drops two or more centiles in weight without explanation.
Over the next few days, she started not finishing her bottles, but would get upset and frustrated as if she was hungry. I was beginning to get fairly stressed out that she was so miserable. She literally slept, fed a bit, got angry, looked tired and slept again.
She was also still not gaining weight.
On 22nd December 2014, when she was 6 weeks old, I was at the point of pulling my hair out! I rang the GP, and he asked if I could bring her in immediately. It seemed a little bit over the top, considering it was 5.30pm, and she was in bed (again!), however he sounded concerned, so of course I took her.
Within minutes of listening to our issues, he pressed on Honey’s finger nails and asked if they were always white. I honestly hadn’t thought to check everyday, but said they were always cold. He then listened to her heart and said it was very noisy and beating at 180-200bpm. It was clear that he was concerned and, when he sought advice from the paediatric ward, they knew instantly that she had a hole in her heart. I still didn’t realise the seriousness of this – people have holes and are perfectly fine, aren’t they?
Honey was transferred to Bristol Children’s Hospital’s specialist cardiology unit on Christmas Eve. This was one of the toughest parts of this whole nightmare. I have a six and a four year old at home, who were so excited about Christmas and wouldn’t understand that their mummy and new baby sister may not be coming home.
When we got to Bristol, they made the official diagnosis. Honey has a 8mm VSD, dysplastic pulmonary valve, patent ductus arteriosus and a small ASD. Both her heart and liver were enlarged and she was in early heart failure. Honey’s particular defects (and size), would not get better on their own. Open heart surgery would be required.
I’m pretty confident that had it not been for my intuition that something wasn’t right and the competency of the GP, the outcome for Honey could be vastly different. In my next post, I hope to tell you how weeks 6 to 13 have gone, and the ups, downs and problems we’ve encountered.
Grace Brown
