Frankie’s Story: #BecauseOfYou

Because of you, we are celebrating 30 years of the charity. To mark this year, we have been asking you to share your stories, finding out who inspired you to become involved in Children’s Heart Surgery Fund. Read on to discover Frankie’s story.

“My son was born at 39 weeks. On all my pregnancy scans, he looked to be normal and healthy. But, when he was born he didn’t wake, feed or cry for the first two days.

He was breathing hard and the staff began to wonder what was going on. I did too as he was my third baby, so I knew what to expect.

The doctor listened to his chest and heard a murmur. He went for ECHO scans and they found a large VSD, a small ASD and a leak on his heart valve.

On another scan, at 10 days old, they told me he had developed heart failure and they didn’t know if he would make it.

Frankie was then admitted to the neonatal surgical unit at Sheffield Children’s Hospital.

They fed him by tube and gave him medicine for his heart failure.

At 5 weeks old, they transferred Frankie from Sheffield Children’s Hospital to Leeds General Infirmary.

He went in an ambulance, in an incubator, with lots of other vital machines to help whilst we were travelling between hospitals.

The next day, he had open heart surgery to have a band put on his pulmonary artery.

This was to keep him stable enough to grow. We needed to wait until he was big enough for more operations to fix the hole in his heart.

He was then put in intensive care at Leeds. He was on a breathing machine, fed by tube, needed oxygen and had a blood transfusion. It was so scary.

A week later, he was transferred back to Sheffield Children’s Hospital to recover and get his feeding back up.

It was then the staff taught me CPR and how to feed Frankie through his tube.

They gave me equipment such as testing strips, feeding tubes and syringes and I was taught the skills I’d need to look after Frankie at home.

I’ve been caring for Frankie at home ever since. Frankie doesn’t have his feeding tube anymore and is even trying to crawl!

He can roll over and do a few things now and is coming on leaps and bounds.

He still sees various hospital staff for follow up scans of his heart to see how he’s doing now.

Once they feel he’s old enough for more surgery that will be the next step.

Frankie is now almost 7 months old and I can’t thank Mr Jaber (Frankie’s surgeon) enough for doing the surgery that saved my son’s life.

#BecauseOfYou.”

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