told by mum

 

Pippa was always our miracle baby. We needed IVF treatment to conceive our Son Rex, so when we found out I was pregnant just before his first birthday, it was the best surprise. I had a relatively straightforward pregnancy and was told everything was fine at my two 20-week anomaly scans. Pippa was finally born in February 2023 at 41 weeks and despite being jaundiced appeared healthy.
Pippa passed all her newborn checks in hospital, and we were discharged home the following day.

Pippa was seen at home by Community Midwives and her Health visitor, and no concerns were identified. Pippa was gaining weight and breastfeeding well.

All this changed when she hit 4 weeks old. I am a qualified adult nurse and more recently now working as a Specialist Community Public Health nurse (Health Visitor). I had weighed Pippa at home with my baby scales and was confused when she had not gained as much weight as I was expecting. I sought advice from Pippa’s Health visitor and my own work colleagues and the advice was similar from all – to reweigh Pippa in one week as long as she continued to feed well and there were no other concerns.

Another week went by, Pippa continued to feed well, we could not see any other concerns, but I reweighed Pippa. This time she had not gained any weight at all but remained the same. Now alarm bells began to ring because she was feeding well, so why was she not gaining weight.

I contacted her GP who arranged an appointment, and she detected a heart murmur. The GP advised us to take Pippa to our local Paediatric A&E to be assessed but at this stage I still did not have any idea how seriously unwell Pippa was.

When we arrived at A&E they were immediately concerned that Pippa’s oxygen saturations were low and she was turning blue. This was the first time Pippa’s oxygen saturations had ever been tested. From this point it became clear how serious things were and although the doctors could not be sure what Pippa’s diagnosis was, they were sure it was an issue with her heart.

Thankfully we live very close to a Children’s heart unit (Freeman Hospital) because if the emergency blue light transfer had of been any longer than the 10 minutes it took us – Pippa would not have survived. Pippa stopped breathing in the ambulance and required medical support to keep her alive. Pippa needed a lifesaving Balloon septostomy in PICU and ventilation to stabilise her and we were informed then of her diagnosis of Transposition of the Great Arteries (TGA), Coarctation of the Aorta and ASD. This ambulance journey and arrival to PICU was every parent’s worst nightmare. I honestly thought we’d lost her, and Pippa was not going to survive. I blamed myself for not realising my baby was so unwell despite the fact she had also been seen by numerous professionals. I had not heard of Pippa’s conditions before but in the couple of days before her surgery, i read every story I could possibly find regarding Children with similar diagnosis.

The doctors were amazed Pippa had battled as long with this condition, as she was 5 weeks old when she was finally diagnosed and we are very very lucky Pippa made it this far. Usually, children with TGA become unwell and could die within the first few weeks of life without surgery.

We were also informed Pippa had been diagnosed with a Stroke, in the form of a blood clot on her brain, likely from her low oxygen levels causing her blood to be too thick.

 

Pippa continued to battle and despite all odds – she underwent 7 hours of open-heart surgery which was a success and is now thriving. From admission to discharge we were in hospital for only 11 days and Pippa continued to amaze us all every day with her speedy recovery.

Pippa is now a very cheeky, happy and healthy little girl whose 1st birthday is 22nd February, Heart month! ❤️ You’d never know she had ever been unwell!

 

If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.