Pippa’s serious heart defects, transposition of the great arteries (TGA), coarctation of the aorta and atrial septal defect (ASD) weren’t diagnosed until she was seriously ill. Her mum, Zoe, shares their story and why she believes all babies should be offered pulse oximetry tests at birth:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
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. Despite being jaundiced, she appeared healthy. She 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 – no concerns were identified. Pippa was gaining weight and breastfeeding well.
All this changed when she hit four 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. 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 and we could not see any other concerns. I reweighed Pippa. This time she had not gained any weight at all, but remained the same. Now alarm bells began to ring – she was feeding well, so why wasn’t she gaining weight?
I contacted her GP, who arranged an appointment and 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 onwards, 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, because if the emergency blue light transfer had been any longer than the ten minutes it took us, Pippa would not have survived. She stopped breathing in the ambulance and required medical support to keep her alive.
Pippa needed a life-saving balloon septostomy in PICU and ventilation to stabilise her. We were informed then of her diagnosis of transposition of the great arteries (TGA), coarctation of the aorta and ASD (hole in the heart).
The ambulance journey and arrival in 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 about children with a similar diagnosis.
The doctors were amazed Pippa had battled as long with this condition, as she was five weeks old when she was finally diagnosed. We are very very lucky Pippa made it this far. Usually children with TGA become unwell quickly and can 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. This was likely from her low oxygen levels causing her blood to be too thick.
Pippa continued to battle and despite all odds, she underwent seven hours of open heart surgery, which was a success. She is now thriving. From admission to discharge we were in hospital for only 11 days and Pippa continued to amaze us all with her speedy recovery.
Pippa is now a very cheeky, happy and healthy little girl. Her first birthday is in February, Heart Month! You’d never know she had ever been unwell!
We are forever grateful to everyone who helped and supported us through that awful time and now feel very passionate to support Tiny Tickers with their campaign for oxygen saturations to be measured at birth.
If Pippa’s oxygen saturations had been measured at birth, it would have helped to diagnose her TGA before she was discharged home and before she became frightfully unwell. Although it wouldn’t have changed Pippa’s diagnosis, it would have dramatically changed the experience for us all as a family.
Every newborn baby deserves the test that could help save their life. Find out more about our Test for Tommy pulse oximetry appeal here.
You must be logged in to post a comment.