Lily the heart warrior

Written by Lily's mum, Michelle.

Before She Arrived

I was 12 weeks pregnant and we were having our first scan. I was offered a blood test for screening and accepted it, a week later we got a call to say our baby had a 1 in 5 chance of having Down syndrome. We refused further testing as the outcome wouldn't have made a difference to us.

I was then looked after by the high risk team as Lily was on the small size, at 36 weeks they decided Lily needed to come out if she was going to survive.


Our Birth Story

On the Sunday I went into hospital to be induced, Lily wasn't happy with this and decided she was going to slow her heart rate down so I had an emergency C-section.

Lily was born at 1.10pm. She was a tiny 4.13lb but she was breathing on her own.

We went back to the maternity ward, Lily's sugar levels were great and she was taking to the bottle, she just had a bit of trouble controlling her temperature.

We still didn't know if she had Down syndrome. My three older children visited and had cuddles.

The doctor came in later that evening and confirmed Lily had Down syndrome.

I decided at that moment that we needed to tell everyone and just enjoy Lily. If I didn't, it would feel like I was hiding her away and was ashamed of her.


The First Weeks at Home

I went home the next day and we had a flurry of visitors all accepting Lily.

Lily was the perfect baby, she slept all night. I even had to wake her for feeds! She didn't cry and she was so content. She was very slow at gaining weight and the sleeping 24 hours a day was concerning me so we had a couple of nights in hospital where they heard a heart murmur, I wasn't worried as the doctor explained lots of baby's with Down syndrome have a murmur which just needs monitoring.


Back to Hospital

Four weeks later we went to Alder Hey to meet the cardiologist, we thought she may just have to have yearly check ups, we weren't prepared for what we where about to hear.

Lily had two holes in her heart and was in heart failure and would undergo open heart surgery in the next four weeks.


Our Heart Warrior

On the 4th September we went to Alder Hey for Lily to have surgery the next day. Lily's dad and siblings stayed in Ronald McDonald House.

At 7am Lily was in her gown and ready for her surgery. At 4.15pm that they finally came to say there were no beds on the ICU and surgery was cancelled. There were three more cancellations and a further seven days before Lily got her surgery.

She was now ten weeks old and weighed 5.3 lbs. We were told because of her size and the fact she had Down syndrome that there was a good chance she wouldn't survive the surgery.

It was the longest six hours of our lives but Lily is a true fighter and defied the odds. Within three hours of coming out of surgery she was even off the ventilator!

She was still on a small amount of oxygen. Lily had a small leak from one of the patches so needed medication. We left the hospital seven days later.

From then on she grew stronger and stronger and became her own character. She is the centre of attention wherever we go and it's like going out with a mini celebrity because everyone wants to say 'hi'.