“I still remember the first time I heard of CHSF. The school I worked at was taking part in Wear Red Day. I remember a coworker telling me how her son was born with half a heart and how CHSF supported her through it.”
“I specifically remember her mentioning help with accommodation so she didn’t have to travel back and forth, between Hull and Leeds.”
“Little did I know CHSF would mean so much to me within the years to come…”
It all started at our 20 week scan. We already knew we were having a little girl so we were just excited to see her again. The sonographer was super chatty and full of jokes. So the moment she went quiet I knew something was up. She didn’t say much, just that she could see something wrong with the baby’s heart.
She asked us to wait in another room while she gathered some things. I remember thinking to myself… it will be nothing to worry about. Just a murmur or something. People live with things like this all the time.
The sonographer came back into the little office to explain that our daughter had a congenital heart defect called Transposition of the Great Arteries. But that meant nothing to me at the time.
Then she explained that our daughter would have to have open heart surgery within the first two weeks of her life or she wouldn’t survive. And this meant I had to give birth in Leeds.
Zelda was diagnosed with Transposition of the Great Arteries at the 20 week scan
I was so overwhelmed I can’t remember much else from that day. The following day I was sent to Leeds to see the congenital heart disease (CHD) specialist, who confirmed Zelda’s condition and explained everything a little better. So throughout pregnancy we were back and forth from Hull to Leeds, having God-knows how many scans and checks.
On one of those visits to Leeds, I remember a lovely nurse showing us around the different wards, NICU, Ward L51 and PICU. Explaining which ward would support us at each stage of our journey. It was a LOT to take in at the time.
A million thoughts rushed around my head, but when she asked if we had any questions I was lost for words. The hospital was huge, it was so far from home, I didn’t even know where to start!
We expected to be away from home for a least a month (that’s what we were told to expect) so we packed two suitcases. One for us, one for our daughter. We weren’t really sure on where we were staying, we just knew we weren’t leaving our daughters side.
We had a planned C-section as the little rascal was breach, on top of everything else! So we thought we would just figure it out day-by-day once I was discharged.
Zelda needed life-saving surgery soon after she was born
Leeds General Infirmary, 2:07pm, 29th July 2019. The doctor held a baby girl over the little curtain and congratulated me and Joe! I couldn’t help but notice how blue she was! I was so worried.
I told Joe to go with our daughter and not to worry about me. I saw our little baby on a table with a oxygen mask over her face, getting wheeled out. The doctors and nurses were running around and looked so busy. I knew it wasn’t good, I knew it was a race against time.
I was stitched up and back in recovery, without my baby. A doctor came over to me asking to sign a consent form. My hands were shaking that much I could hardly hold the pen, never mind see straight from all the tears.
Joe came to me half an hour later with a photo of my little girl on a ventilator and lots of wires all over her. He told me not to worry, she was okay. And that she had had an arterial septostomy.
Six hours passed before I got to see her. There she was… Zelda. Our heart warrior.
After five nights of Joe sleeping on the floor at my bedside, I was discharged. We were given a key and a piece of paper with directions to get to the Brotherton Wing. It felt like a million mile walk with heavy stitches in the August heat. But I have never been so thankful that we had somewhere to sleep, eat, wash… The best part was it was only 10 minutes away from my daughter’s hospital bed.
On our ninth night in hospital, we met Zelda’s surgeon. She explained that it was time… Zelda’s oxygen levels were in the 60s and still dropping day by day.
She told us that without this operation Zelda would have a very short future.
The next morning, 2am, I couldn’t sleep, knowing ‘today was the day’. So we headed down to Zelda’s ward. We sat by her bed until 12 o’clock.
When we walked her down to theatre, I kissed her hand and said night night. For all I knew that might have been the last time she ever heard my voice. Her little muffled screams through the mask as she went to sleep were truly heart shattering.
That was the longest day ever. We sobbed most of the day. We went back to our room and tried to get some sleep. Later that evening we got the call to say Zelda was out of surgery and all went well!
I remember thinking, if all goes well we could be home in two weeks!
Zelda had her chest closed the day after surgery. She then went on to have a couple of bumpy days, but over all she made a speedy recovery. We got to take our little girl home just five days after surgery (four days after having her chest closed). With the cutest little Katie bear and medal to prove it!
We will always be so thankful for everything surgeon Carin Van Doorn, Children’s Heart Surgery Fund and everyone involved did for us.
I cannot believe we’re coming up to Zelda’s third birthday, a day we were once unsure we would ever see. Thank you for everything! ❤️🩹
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region. We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
Feedback from heart patients and families tells us your story will help others dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
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