Tetralogy of Fallot – Toby-Jacob’s Story
Toby-Jacob was diagnosed with Tetralogy of Fallot before he was born. His mum, Amy, tells their story:

We were told babies with this condition often have a chromosome abnormality, but we refused testing for this until after he was born. Eventually we found out he has a rare condition known as XQ28 Duplication, but there is limited knowledge about whether this is related to his heart condition.
I continued to have regular scans throughout my pregnancy and was closely monitored by local and specialist hospitals. During my pregnancy this caused a lot of stress and uncertainty. My local hospital did not want to deliver a heart baby. At every appointment I had, they told me I should to go to the specialist hospital to deliver. The specialist hospital had been monitoring my son’s heart on and assumed he would be born stable (which he was) and therefore would not allow me to deliver there. Up until the week before my son was born, I did not have any confirmation of where I needed to deliver. Eventually my local hospital agreed that, under the specialist’s advice, treatment plan and support, they would deliver my son.
My son was born via planned C-Section on 6th December 2017. He was beautiful but I was not able to hold him for over 6 hours. He was taken into special care and monitored.

The local hospital had limited understanding of his condition and diagnosed him with a chest infection. They were going to send him home on oxygen until he had turn for the worse. He was pumped with oxygen via a mask and tubes in his nose just to keep him somewhat stable before being given heart medication.
He remained in this state for a day before he was stable enough to be transferred to the specialist hospital. Toby-Jacob was scanned multiple times and we were informed that he couldn’t leave hospital until he had undergone surgery, but they were unsure when this would be. Doctors were unable to detect his blood arteries and met with surgeons many times to discuss the risk of surgery without knowing where these were in his heart.
After a few weeks, they decided that, although he was only three months old and there was some uncertainty which procedure would be best for him, he would be going under the knife for open heart surgery. His Christening was supposed to take place during the week of his surgery, so the priest did a blessing the day before his operation

Toby-Jacob made a fast recovery. He was off ventilation after a few hours and, after only five days, he was allowed to take me out for lunch for my first Mother’s Day. The next day he was allowed home.

Find out more about about Tetralogy of Fallot here.
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