Atrial Septal Defect – Jade’s Story

Jade was born prematurely and was eventually diagnosed with a number of heart defects, including coarctation of aorta and atrial septal defect. Operated on when she weighed just 2lbs 2oz, she is Britain’s smallest ever open heart surgery survivor. This is her story, first shared in 2016, and told by her mum Mags:

Jade is our infertility baby, who arrived after four years of trying.

She was born prematurely at nearly 30 weeks gestation in February 2001. I was taken in to Aberdeen’s Maternity Hospital after I saw a midwife about my synphosis pubis dysfunction. From my urine sample, she discovered I had too much protein. I still didn’t think anything was wrong – apart from maybe a urine infection. But once they put me on the tracer machine, the midwife said we needed to go to labour ward.

A doctor told me (quite bluntly) that my baby was dying and needed to come out as soon as possible by emergency c section. I was so scared because there were so many doctors and nurses in the room and I just kept praying for my baby to live. I remember when she was born she just looked so tiny and red. It was such a relief when she gave a cry before being rushed off without me even being able to touch her.

I was wheeled in to see her in NICU  after a few hours and just burst out crying.

When she was eight days old I had my first cuddle with Jade. She did well for a premature baby at first but was sent to HDU at ten days old.

When she was 16 days old, my husband, Ian, and I popped through to the parents room for a cuppa. We weren’t even gone for 10 minutes when a nurse came in to find us. We rushed back to Jade and found people everywhere.

A doctor took us aside and told us Jade had suffered a cardiac arrest. They weren’t sure what was wrong with her heart but advised we had less than 20 minutes to go home pack some things as they had to arrange for her to be moved to another hospital. Initially they were going to take her by road but we were told she wouldn’t make it, so she flew by air ambulance to Glasgow’s Yorkhill Hospital, 200 miles away. I got to fly with her along with a doctor but poor Ian had to drive down by himself.

When we arrived, Jade was put into an induced coma. I hadn’t stopped crying since Aberdeen.  I just wanted to pick her up and run as I thought that way she would be fine. It felt as though I’d been physically punched in my chest as I’d never felt pain like it. I was her mum and it was my job to protect her – I felt a failure.

We were told all the risks of surgery and the odds were stacked against her, but we had to give her a fighting chance. Her surgeon would prefer to wait until she grew a bit for surgery, but she wouldn’t make it without immediate surgery. My tiny 2lbs 2oz Jade underwent an 11 hour open heart surgery. She’s Britain’s smallest open heart survivor and also the smallest baby her heart surgeon had ever operated on in his 37 years.

Her heart stopped after they unclamped her organs. Our hero heart surgeon told us he had to massage her heart with one finger as it was smaller than a walnut. I asked if I could hug him.

He also told us that Jade had coarctation of the aorta, bicuspid aortic valve defect and atrial septal defect.

Jade was kept in a coma and flown back to Aberdeen’s NICU 15 days later. I wasn’t able to hold her for that whole time. She carried on doing well and we finally got to take our precious, wee girl home on the 9th May.

Jade had re-narrowing at the repair site when she was 13 years old, as well as ballooning. Unfortunately, this made it worse. So four months later she had a platinum stent put in.

We also found out she had connective tissue defect with eight symptoms so far.

Jade doesn’t let any of this stop her. She’s started Shotokan Karate at age nine (but doesn’t spar in case she receives a punch or kick to the chest). She was in the Scotland Squad and is a black belt.

She plays guitar and helped our family to set up a volunteering group for British Heart Foundation. She won the BHF Scotland’s Fighting Spirit Award and was also given The Order of Scottish Samurai Award.

We are so proud of our darling daughter. She’s doing quite well just now, although we found out last week that she has some leakage in her pulmanory valve. My girl has once again embraced this and, in her words, will ‘just deal with whatever life throws’ at her.

Update 2022

Jade is now an adult cardiac thoracic nurse and she loves it.

Although she graduated last year, Jade didn’t get to go to her graduation ceremony then because of the health risks of catching COVID. She had to shield and not do her last placement until months later.

She always wanted to be a nurse and give back all the love and care she received.

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