My Baby’s Heart Defects: Laila-Rose’s Story

Laila-Rose has multiple heart defects, which were diagnosed at her mum’s 20 week scan. Although receiving the news at the scan was initially traumatic, mum Kimberley says they may not have their little girl today if the sonographer hadn’t spotted there was something wrong with Laila-Rose’s heart. This is their story:

My Baby's Heart Defects: Laila-Rose's StoryAt my 20 week scan, I was simply expecting to find out the gender of our baby. But we didn’t only find out we were having a girl, we also found out Laila-Rose had a problem with her heart.

The sonographer noticed that the right side of Laila-Rose’s heart was much bigger than the left. She also wouldn’t move her arms or legs during the hour-long scan, which lead the doctors to believe she was at a high risk of having Patau Syndrome. They then told us that if this was the case, she would only live for a few hours. I could either give birth to her in the next few weeks or carry her full term, but she wouldn’t have any chance of survival either way.

We then went in to have the amniocentesis test. Waiting five days to get the results to know whether our baby was going to live or die was the worst time of our lives. We got a call on New Year’s Eve telling us our baby didn’t have Patau Syndrome. But she had heart defects and was going to need heart surgery when she was born. Hopefully her heart could be fixed. This news was such a relief and, compared to what we had been dealing with, we felt lucky that she just needed her heart fixed.

My Baby's Heart Defects: Laila-Rose's StoryDoctors didn’t know what type of surgery our baby would need, but they knew she needed monitoring very closely. I had lots of scans and frequent hospital visits throughout my pregnancy.

I went in to threatened preterm labour at 29 and 31 weeks, but luckily she stayed in the womb until 37 weeks. Laila-Rose was taken straight from me and taken to intensive care. She was then transferred to Glenfield Hospital that same day.

The doctors at Leicester wanted to wait to see how her heart would work on its own, so they took her off the medication that was keeping the duct in her heart open. Within a few days, all her SATS dropped and her heart started to block up. They then knew she was going to need her heart surgery to repair the aorta, as there was a coarctation.
Doctors also noticed Laila-Rose had another problem with her heart, which was Left Heart Hyperplasia. The valves on the left side of her heart were wide enough for blood to flow through for now, but they were too close together and this may have caused a problem in the future.
Surgeons repaired the coarctation, which took two hours, but Laila-Rose was in surgery for four hours altogether. Compared to what the surgeons deal with on an everyday basis, Laila-Rose’s surgery was one of the easy ones. After her surgery, her lungs collapsed and this made her recovery slightly longer than usual. But, within ten days our baby was ready to come home.

My Baby's Heart Defects: Laila-Rose's StoryWe were so amazed that someone so tiny could recover from such a major surgery so quickly. At her first check-up, they noticed the mitral valve had mild regurgitation and that the aorta was fused. She was now diagnosed with Bicuspid Valve along with the Coarctation of the Aorta, Left Heart Hyperplasia, and she also has a PFO (Patent Foramen Ovale) with left to right shut.

Laila-Rose is being monitored with scans and check-ups and will have them for the rest of her life, which is reassuring for us. With her being so tiny during her surgery and recovery, she will never remember all this. But we will never forget. Looking back now, finding out her heart wasn’t growing properly felt like the unluckiest day of our lives. But actually, we are very, very lucky that the sonographer detected our baby’s heart defect, so doctors could make a care plan to keep her alive. Not everyone gets the opportunity to prepare for this and for that we are so grateful.

All the doctors, nurses and surgeons at Glenfield in Leicester were fantastic and the care we received couldn’t have been any better. We are eternally grateful for all that they have done to save our little baby’s life.

Find out more about different types of congenital heart defects here.