Gabriela – A princess who lives with half a heart but is full of life.

Gabriela is an inspiration behind my little business @braveheartflowers, Everything I do is for her, to give her a happy life no matter how long it will be. She keeps us going and we love every minute we get to spend with her, our heart warrior princess.

“At the end of 2019 I found out we were expecting our third baby. As my previous pregnancies with the boys (who are now 10 & 12) went well, I had no reason to worry. Little did I know what was about to happen. In April 2020 at the 20-week scan, the sonographer couldn’t see all of Gaby’s four heart chambers, but we were told it was just her position so nothing to worry about and to come back in two weeks for a repeated scan. Two weeks later, Covid19 hit the country, so my husband wasn’t allowed to come with me. Whilst the woman was doing the scan, she stopped halfway as she was unable to see the baby’s full heart. Trying to keep tears to myself while sitting in the waiting room full of expectant mamas wasn’t easy.

After meeting my midwife, she referred me to a specialist hospital in Liverpool. Nearly two weeks later, again on my own, I sat in a waiting room waiting for another scan. A couple of specialists scanned Gaby’s heart, then I was called into a room while the security guard went to look for my husband. We sat waiting, trying not to panic but we knew it was bad news. The room was empty apart from a table with a box of tissues.

We were given three options.

1. To terminate early as Gaby wouldn’t have any quality in life and probably wouldn’t get past the age of six.

2. To wait and let her be born and let her pass away peacefully in hours or days.

3. To hope she’s strong enough when born and let her go though at least three major open-heart surgeries in the first couple of years.

Four specialists walked in, sat in front of us and said “there’s something really wrong with your baby’s heart.” They continued saying Gaby’s heart has developed only one side and her condition is called Hypoplastic left heart syndrome. The severity of Gaby’s heart was 10/10 so chances were really slim.

Hypoplastic left heart is one of the most severe heart conditions where the left side of the baby’s heart hasn’t developed or is really small and not functional. My world went crashing down.

We were given three options but we sure were not ready to give up. I could feel her kicking but knowing we might not have our precious girl soon, broke my heart.

On 21st July 2020 our beautiful Gabriela was born and she looked perfect. We had an amazing cuddle before she was taken to NICU to take special medication to keep the duct in her heart open while all test were being done.

The First Surgery

Gaby’s first open heart surgery was when she was just 6 days old. She did so well, like a warrior, but I can never forget that time when I saw her with an open chest. I could see her heart beating from outside with all wires, medicines, her helpless little body attached to intubation machine.

Gaby was a little superstar and we were allowed to come home after 4 weeks, we knew we didn’t have a lot of time until she needs the next surgery. Since then, all we knew were medication, nurse home visits, and hospital trips.

The Next Surgery

On 21st December, Gaby went to hospital for CT scan when she was unwell. Her oxygen dropped into low 40s (%) and it was discovered it was time for her next open-heart surgery immediately. We spent her first Christmas in hospital, and she had her second open heart surgery on 29th December 2020.

We were told her surgery will be more complicated than it should be, but we had to trust surgeons. At just 5 months old, our baby was taken away for her second surgery. Instead of a 5-hour surgery, Gaby was operated for 11 hours and we almost lost her. Gaby’s surgery was fully successful, and she was bleeding badly. The next 24 hours were critical. Gabriela’s chest was left open for over a week, and she needed nonstop blood transfusions.

Our girl knew how to fight but also knew how to keep surgeons, nurses and us on our toes. Recovery was really slow but thankfully steady. Gabriela needed extra surgery (thankfully not open heart) at the age of 9 months but since then she been stable. She had one more surgery to widen her stent, but she did great.

The Future Awaits

Gabriela is 3.5 years old and lives her life to the fullest. Her future isn’t clear and she stays on palliative care. Gabriela can’t walk a lot so need wheelchair/special pushchair, and she gets tired really fast. Gaby’s oxygen levels are at the range of 73-80% so her lips, cheeks, toes and hands are always blue and cold. It breaks my heart seeing her struggle or when she gets upset when she really wants to do things kids her age can do but she just can’t.

We are now waiting for her next open-heart surgery, which should be in 6-12 months’ time. We take every day as it is. We try to spread awareness for CHD (congenital heart defects), HLHS (Hypoplastic left heart) and organ donation as Gaby most likely will need a new heart at some time in her life.