This is Angela’s story about her baby girl Isla! Thank you for sharing your story and pictures Angela.
*Please be aware the photos contained in this post are very upsetting*
When my partner and I went to my anomaly scan at 21 weeks I was so excited to see how much our baby had grown since our earlier scan and this being my 2nd baby, I knew how much baby’s grew and how amazing this scan was!
Everything was looking good except our baby wouldn’t turn around to get a good view of its heart, they tried for half an hour then said we will try again in a few days. We came back after a week only to experience the same thing, we tried everything to make baby move, jumping, drinking fizzy drinks but no, my baby would not budge!! So we gave up but they wanted me to come back again in a week! This time my partner couldn’t get more time off work so I went on my own – I was starting get used to it now and remember joking around and saying so is baby co-operating today, the Dr just said yes and seemed a little serious suddenly making me feel very nervous, so I asked is everything ok?? The Dr said I just want to get someone else to have a look as I’m still not getting a great view of the heart, I still felt slightly uneasy but just thought it was baby playing up again. Another lady came in the room smiling at me and stared straight at the screen for what felt like ages and then said the words I will never forget “you’re baby has a heart condition!!!!! I am more than sure it is a CHD called Tetralogy of Fallot” I remember thinking sorry what??!! My baby has what!!?? What does this mean?? Will my baby survive!!?? What can I do!? Can I still have my baby?! Heart condition ….. is my baby going to die!!?? And then blurting it all out at once through streams of tears!! That day a piece of my heart broke!
I was then sat down and things were explained a little more, I then met a specialised midwife who explained things more, gave me lots of information and told me I would be going to the Royal Brompton hospital the next day to find out exactly what this meant and what would happen. I left the hospital that day not really understanding much except that my baby had heart condition and would need open heart surgery in the 1st year of its life. I phoned Ted (my partner) and through tears told him the news trying to explain something I didn’t really understand!
Over the next few months we learnt all about our baby’s heart condition and about the open heart surgery that they would have. Doctors at the Royal Brompton and the specialised midwives actually everyone we met were amazing and we could ask anything we wanted, many times over and over again and they would always answer them in detail. We learnt all about Tetralogy of Fallot (TOF) and now I will explain it best I can…..It has 4 problems with 2 main problems –
1. The main pulmonary valve is narrow (pulmonary stenosis) and the muscle below it is thickened.
2. There is a large -septal defect or VSD- between the 2 main pumping chambers of the heart (the right and left ventricles)
It also includes an overriding aorta and the right ventricle is more muscular than normal.
In normal circulation, blood passes through the lungs to collect oxygen. In babies with TOF the narrowing in the pulmonary valve and the thickened muscle below it mean less blood can flow through to the lungs so oxygen levels in blood are low.
On the 25th march 2010 at 2.25 pm Isla Grace Stonebanks was born very PINK, crying and beautiful. I got to hold her and her big sister Hazel got to come and say hello before she was taking with Daddy to NICU. Isla surprised everyone and only spent one night in NICU and then came home which I have to say we were quite nervous about! Isla was kept a close eye on; weekly visits from nurse checking her saturation levels and heart rate. Isla was also given blood tests in 1st few weeks to check for a chromosome disorder called DiGeorge syndrome which is related to CHDs especially TOF and the test came back positive, this can mean many things that we won’t really know until Isla grows up such as slower development, having speech difficulties and more. It is also the cause of her heart defect as it is a structural disorder, we later found out the Isla has a small cleft palate also related to DiGeorge and heart defects. Isla continued to do well but her saturation levels were slowly dropping and her colour getting greyer but we were lucky and had no blue spells, but it was obvious that it was getting close to surgery time. We received a phone call and told that surgery would be on September 1st!!! After a night in hospital, chest x-rays, blood test, ECGs and echo’s the Doctors came in on September 1st to tell us Islas white blood cells were high indicating an infection so surgery would not take place! I was actually so relieved I could have run out of hospital and we pretty much did! A week later we had another phone call and surgery would take place on September 15th.
On the September 14th we went back to the Royal Brompton, but we didn’t have to do all test again except Echo and blood tests and everything looked good to go ahead but this time I was pleased, I didn’t want it to be cancelled again. I wanted to get it over and done as I was petrified.
The next morning we were both so scared and I just held Isla until the surgeons came and said they were ready. The walk to surgery holding my baby was a very long walk, feeling very sick. We arrive at theatre, my heart was pounding. Isla looked very unsure of her surroundings; I sat down on a chair and held her, tears streaming down my face as they put my baby to sleep. Ted and I then kissed her goodbye and left her. That day another piece of my heart broke. It was nearly 6 hours before we saw Isla again. We were told by the surgeon that everything had gone well and they had also closed a large ASD- a whole between the top to chambers of the heart.
Nothing could have prepared me for seeing my baby in intensive care covered in wires, tubes, and machines and surrounded by doctors. But I was so pleased she had made it out of surgery. The next 2 weeks were the longest of my life and I will never forget but slowly our Isla came back to her old self BUT pink again!! I will never be able to thank the Royal Brompton for saving my baby’s life!!! THANKYOU.
Isla continues to do well and has an amazing scar to show the world everything she has been through and how amazing she is! OUR HERO!!
We go back to hosp on September 26th to find out how successful surgery has been. Isla has come on leaps and bounds in just 2 weeks since surgery she has so much more energy and is awake more, she is rolling around and the best thing of all is she has said her first word, mum……….just what I need after everything!!! We love you our heart hero Isla x x x x