During her pregnancy, Daisy discovered that her unknown baby had multiple heart defects. Daisy was pointed in the direction of Tiny Tickers, where she was able to receive our support materials. Here, Daisy shares her story and what followed:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
At 20 weeks pregnant, I went for a scan at my local hospital. My sonographer told me she couldn’t get the image she needed to sign me off, so I had to be referred. I was told not to panic.
The same day, I went to a specialist hospital where I was told my son Louie had transposition of the great arteries (TGA), atrial septal defects (ASDs) and ventricular septal defects (VSDs).
I was so scared because I didn’t know what this meant for Louie and what his future would look like. I knew nothing about TGA or congenital heart disease (CHD).
The consultants handed me a leaflet, along with support packs from Tiny Tickers. The packs helped me understand that I wasn’t alone and explained CHD to me.
On the 24th of June, my son Louie was born. Straight away, he was taken to the neonatal intensive care unit (NICU). Louie had a feeding tube and Prostin to keep the heart duct open.
Three days later, he moved into the children’s cardiac ward. While he was on the ward, they found fluid around his lungs, so he was given daily furosemide. His oxygen levels would drop into the 40s and he would suffer with apnea episodes.
Due to his struggles, after three days Louie was moved to the PICU and put on the CPAP machine.
After four days, he came back down to the ward on vapertherm.
Then, five days later, Louie then went back to intensive care because of apnea episodes and oxygen dropping again. He went back onto the CPAP machine and was intubated the next day.
On the 14th of July, Louie went into surgery for seven and a half hours. The surgeons performed an arterial switch operation and closed his ASDs. Surgery went well with no complications, but he required blood transfusions.
On the 16th of July, Louie’s drains were removed and he was extubated. Louie was left with a feeding tube and nasal prongs for oxygen.
On the 17th of July, Louie went back to the ward for recovery, where he was later taken off oxygen and had his feeding tube removed.
On the 28th of July, we went home. Through it all, he is still the happiest little boy.
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