She was transferred from Tameside Hospital to Oldham for cooling treatment. We were in Oldham NICU for 10 days, transferred to Tameside NICU for 10 days and then onto the Children’s Unit for 5 weeks. I felt so many emotions (fear, guilt, sadness, worry, hope and relief) nothing can prepare you for it, but you can get through it. Heidi is our first baby, so we didn’t have other kiddies to look after, and we were able to stay in the parent’s room across the corridor.
We encouraged each other to take it in turns to get some fresh air, or have a shower, you don’t necessarily want to or feel like it, but a small break does you good. It’s hard but it is important to try and be kind to yourself and talk to each other. Heidi was diagnosed with cerebral palsy, epilepsy and severe reflux. The lack of oxygen had caused serious damage to her brain.
It’s 3 years since we were in NICU. At the time, it felt like we would never get out. I wish someone could have given us a snapshot of what life would be like as we settled into our journey, it may just have reduced some of the anxiety and sleepless nights.
Just before Heidi’s first birthday we were back in hospital (Royal Manchester Children’s Hospital) where she had surgery for a tracheostomy. I was terrified, but it was the best decision we could have made. It significantly improved Heidi’s quality of life, and soon after we started to get the first smiles from her. Trachi life is now completely normal for us, no biggie, and as so many in similar situations to us, you just learn and adapt.
Heidi is continuing to do well. She still has challenges of course – being diagnosed with cerebral palsy, non-mobile, non-verbal, hearing and visual impairments and is completely tube fed. On paper that’s not the best list, but the reality is, Heidi is a happy, settled and very much a loved little girl. She has started a nursery placement at a local special needs school, and even in the few months she has been there, we have already seen developments. Things are improving, and her personality (and a little sass) are coming out. We’re having work done at home so that as Heidi gets bigger we can move and handle her safely with lifts and hoists. Applying for funding can be a bit testing, but I think we’re finally there and it will be nice when it is all done.
When we were in NICU (before Spoons was established), it felt quite isolating as we were the only ones with a full-term baby in there. There were so many premature babies and families, and I very much felt the odd-one out. I hope that by sharing our story we might reach out to someone who is at the start of their journey and be able to offer some hope. All babies, regardless of when they arrive, are super special…and way tougher that I could ever have imagined!
Heidi’s parents Sarah and Steve have set up Peeps, a charity that supports families affected by HIE.
Heidi suffered a HIE (Hypoxic Ischemic Encephalopathy) event and lack of oxygen, shortly after birth.