Iva was in and out of hospital with respiratory issues for the first 12 months of her life. Her heart defect, double aortic arch, was finally diagnosed after many tests. Her mum, Kelsey, shares their journey:
When myself and my partner found out we were expecting in November 2018, we were absolutely delighted.
I remember the first scan we had – I was only 8-10 weeks along but we could see her little heart beating and we became so excited to be her parents. It was the best feeling in the world.
Unfortunately, Iva’s heart defect wasn’t picked up on our 20 week-scan or during her first 12 months of life.
Iva was born on the 21st of July 2019, just three days after her due date. She was absolutely perfect. She was so chunky, had a head full of hair and the brightest blue eyes. We were allowed to go home the day I gave birth to start our new family.
Soon after we took Iva home – about a month or so – we started noticing a few odd and worrying symptoms. Iva’s breathing would be very heavy and thick, she also appeared to get out of breath easily.
But our real concerns didn’t settle in until we started to wean Iva in the December. When we let Iva try bits of food, her breathing would become really harsh and she would choke. Repeatedly. Even on pureed food.
March 2020 is when things took a turn for the worse and the complications of Iva’s heart defect became clear. Iva fell really ill and from there it was the hardest eight month battle to get to the bottom of her breathing problems.
Iva had stridor persistently and continued choking on her food daily while going blue around her mouth. She was often in respiratory distress. Her neck would retract, along with her chest, and her oxygen levels often dropped into the 80s. She was extremely vulnerable to simple viruses and colds and they would make her extremely poorly.
Watching your child constantly struggle to breath is heart-breaking and made worse by not knowing why she was always poorly. I knew there was something more serious going on, that it wasn’t normal the way she struggled. Nothing ever eased her struggling. I just didn’t know what to do.
We had a few diagnoses over the course of those eight months. A few to mention were: croup, bronchiolitis and tracheobronchomalacia.
The doctors tried every medication they could until there wasn’t anything else to try. She was on antibiotics, multiple steroid inhalers, adrenaline, nebulisers and oxygen, when required.
Since Iva wasn’t getting any better, her breathing wasn’t improving and she was constantly in and out of hospital, we were finally referred to ENT. Iva had been admitted to hospital a total of 27 times during those eight months, each and every stay was gruelling and lonely because of the pandemic.
Then things got complicated. We were thrown into a world of hospital appointments, tests after tests and medical terms I’ve never heard of.
On the 29th of June 2020, Iva had a scope down her throat and we got the diagnosis of tracheobronchomalacia. The bottom of her trachea leading into the bronchi tubes were severely narrow and this lead to a referral to the respiratory specialists in Leeds.
Once we were seen by the specialists at the Leeds Children’s Hospital, they ordered a barium swallow test, a echocardiogram and then on the 23rd of October 2020 Iva had a CT scan. This finally confirmed her heart defect. A double aortic arch which was causing the vascular ring. A double aortic arch is an abnormal formation of the aorta, the large artery that carries blood from the heart to the rest of the body. This caused her trachea and esophagus to be compressed over 80 percent. It all made sense now.
I remember hearing the words “heart defect” and I couldn’t really take anything else in. Her consultant continued in detail about the defect and the severity of it for Iva. I was just wrapping my head around being told that there was something wrong with my baby’s heart, to then be told she urgently needed heart surgery.
The next few weeks were pretty blurry as we tried to ready ourselves for her operation and looked everywhere for information, outlooks, risks and other people’s stories.
We were admitted on the 12th of November and scheduled for Iva’s surgery the following morning. We had all the pre-op assessments done – blood tests, xrays, ECGs. Her surgeon was amazing and I was so grateful he was the one doing her surgery. He went through what he hoped to achieve and the statistics of the surgery. He then went through all the risks. I didn’t want to hear them, but knew I had to. I signed the form while cuddling Iva and hoped that it wouldn’t be the case for her. That it would be as straight forward as it possibly could be.
The morning of her surgery was difficult. I was in the hospital alone with her – only one parent was allowed due to COVID19.
The surgeons came and gave me updates on when Iva would be going down, but due to an emergency surgery in the night, everyone’s was delayed. I tried to keep us as busy as I could until it was her turn.
Iva’s nurse came and said they were ready for her around 2pm. I rang her dad and he made his way up, as he was allowed to walk down to surgery with us – something I will always be grateful for.
I decided I wanted to be with her when they put her to sleep. It was devastating, I was handing my baby over and putting every bit of hope I had in her surgeon.
Iva was in surgery for a few hours and we had already agreed to not just sit around and wait. We tried to make it all as positive as possible. Her surgeon rang around four hours later and said it went amazingly, there were no complications and he’d managed to cut and tie the vessel off.
When we walked into PICU, we had no idea what to expect and it was incredibly rough seeing her with all the wires, cannulas, the chest tube and her new scar, but we were just so happy to have her back. She was already slightly awake! This was no surprise with Iva. All the nurses were joking about how feisty she was and the fight she had put up. She spent the night in PICU and was then able to move to the high dependency ward as she was breathing on her own and her chest tube was removed.
It took a day or so for her to come round, as she was on morphine to keep her pain under control. Once she did, she bounced back. She was up and on her feet two days after her surgery. There was no stopping her.
We spent a total of five days at the Leeds Children’s Hospital with minimal complications. Iva’s liver enzymes were high, they think this was due to the morphine, and she had a small amount of surgical emphysema on her post op x-ray. But she continued to go from strength to strength and they agreed we could go home the Monday, with a repeat blood test the following week.
I believe that if Iva’s heart defect were picked up during my pregnancy or soon after birth, it would have made the world of difference. We could have let it sink in, have time to prepare for what was to come and be somewhat ready to deal with it.
Since Iva’s surgery she has a new spring in her step. She’s able to run around and play without getting out of breath or tire easily. She’s even managed to go back on to solid food, which she enjoys very much. We call her our little heart warrior and we really do feel like the proudest parents in the world.
I wouldn’t change any part of Iva’s journey as hard as it’s been. She has shown true strength and resilience – I didn’t believe it was possible from someone so little. She’s made us understand what a gift health really is and the importance of it.
Does your baby have a heart defect? Find support and information here.
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