‘They told me, ‘It’s nothing to worry about. Every baby does this.’ She was turning BLUE. I knew this wasn’t normal.’: New mom births baby with congenital heart defect, ‘She makes me proud every day’

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“Going for my 20-week scan, I wasn’t expecting any surprises, as we decided to keep the gender of our baby a surprise. Walking out of the scan with my case notes written on a piece of paper, saying, ‘Abnormal Heart Vessels,’ I had no idea what to feel. The scan went in a complete blur. And my partner and I just looked at each other and said, ‘What the hell just happened?’

The longest days passed and after meeting with two fetal heart specialists, I was told my baby had a congenital heart defect called a right-sided aortic arch. I was told it looked fine, but my baby’s heart vessels had grown the wrong way. They said her heart would work completely fine. We had monthly scans where we saw our baby growing perfectly, and our minds were kept at ease. I gave birth to a healthy baby girl and we were overjoyed. I felt an instant connection to Elodie, and it was a love I didn’t know was possible.

Courtesy of Grace

When Elodie was 6 months old, we began giving her food and I handed her a little rice cake. After taking a few little bites from it, Elodie turned blue at the lips. It was every parent’s worst nightmare. This started to be a regular occurrence. I told friends and family members and our health visitor, who said, ‘Babies have a sensitive gag reflex, it’s nothing to worry about.’ But deep down, I knew this wasn’t normal. I went back to her consultants and told them what had happened. I expected them to give me the same reaction everyone else did. But straight away, they seemed concerned.

Elodie was referred to have a CT scan and a barium swallow x-ray. She was diagnosed with a vascular ring, which meant her heart vessels were compressing her esophagus and trachea. At 1 year old, Elodie had her first heart surgery. Looking back now, it was an absolute breeze. But at the time, it was awful. Laying your baby down on a surgeon’s table is something no parent should have to do. Elodie recovered so quickly, and within 3 days she was discharged. Going home, it felt like nothing had happened and we quickly resumed our normal lives. I felt so happy, thinking this part of our lives was over and we could move on.

Courtesy of Grace

3 months later, Elodie had blue episodes when eating again. This time, it felt so much worse. I took her back to the consultants, where she had another CT scan and barium swallow. It was confirmed again her vascular ring had come back and was compressing her esophagus again. I felt completely devastated. It was the most worried I had ever been. I knew this heart defect we were told was nothing to worry about was actually much more serious. I was terrified at what action needed to be taken, but equally, I was terrified this was going to be unfixable and something my daughter had to live with.

Elodie was referred back to the cardiologist, who told us Elodie’s only cure was major open-heart surgery, a very complex surgery where they would reimplant her aortic arch to where it should be. Meeting with the surgeon and him telling us what needed to be done made me feel physically sick. I was in complete disbelief he was talking about my daughter. He said, ‘We have three options: we do nothing, which could be life-threatening, we fit Elodie with a percutaneous endoscopic gastrostomy (PEG) for life, or we do this operation. The final, and only, cure to her congenital heart defect.’

Courtesy of Grace

My partner and I spoke for a long time, but we knew the right thing to do was for her to have heart surgery. We thought the recovery would be the same and she would be in and out in a few days, and then we could finally move on from this and get on with our lives. Elodie went for her open-heart surgery, and after 7 hours, we got the call she was out and the operation had been a success. Shortly after her operation, they wanted to take her off the ventilator, as she was stable and appeared to be doing really well. As soon as they did this, we knew something was seriously wrong.

The doctors and nurses were all rushing around her, trying to help her and stable her breathing. Elodie was working so hard to breathe, you could see her sucking her sternum and ribs in. I was shouting and begging for the nurses and doctors to put her back on the ventilator, which they agreed was the safest option for her. The following day, as I sat by her bedside, I feared for her life. Due to COVID, we could only be with her one at a time. Being there on my own was the scariest thing I have ever done. Everyone was in PPE, so you could only see people’s eyes. I was desperately trying to seek reassurance from the nurses, but they weren’t giving anything anyway.

Courtesy of Grace

I felt like it wasn’t real life and I was completely blaming myself. I kept thinking in my head, ‘I’ve led her to this. I laid her down on the surgeon’s table. I’ve done this to her.’ A PICU consultant came and sat next to me and said Elodie needed to go back to the OR for a bronchoscopy. I told her, ‘She’s not going anywhere, I feel like she’s too weak.’ She told me she understood, but Elodie needed to go. I broke down crying and said, ‘Promise me she’s going to be okay,’ and she just replied, ‘We’re really concerned, Grace.’ It was at this point I didn’t think I was going to be coming home with my daughter. I called my sister in complete hysterics and told her I didn’t think Elodie was going to make it.

Courtesy of Grace

Before her bronchoscopy, I was in a room with an ENT specialist and a respiratory consultant. They asked me if I had any questions before she went down to the OR, and I just asked, ‘Am I going to get my Elodie back?’ They replied, ‘Long-term, we think you will.’ It was every parent’s worst nightmare, and I couldn’t believe what was happening or what they meant by their answer. At Elodie’s bronchoscopy, it was clear her heart vessels had also been compressing her airway, and now they were collapsing. The consultants seemed positive it could possibly be surgical swelling.

Elodie had 10 days of bedrest in the ICU on the ventilator, heavily sedated. But each day, she didn’t get better and we had periods where she had to be resuscitated and put under anesthetic. We would be woken in the night by scary phone calls from the PICU unit, saying her oxygen levels had dropped low and she had turned blue. Those days were the darkest days of my life. I couldn’t understand how my two-year-old was on life support. How I could breathe and she couldn’t? I felt angry.

At her final airway assessment, she was diagnosed with severe tracheomalacia, with a complete collapse and severe bronchomalacia. Elodie had gone her lifetime with her airways being compressed. Despite her heart being fixed, we were left with devastating damage it had left behind. The doctors said they had never seen a case like Elodie’s, but it was inevitable this was going to happen, and it happened at the right place, right time. Elodie’s only hope was to be fitted with a tracheostomy and ventilator. The first emotion I felt was pure devastation.

Courtesy of Grace

Despite Elodie having a heart defect, you wouldn’t have a clue. She had so much going on. She was your completely normal, happy, intelligent 2-year-old with so much going for her. Being faced with her being changed in any way was completely heartbreaking. But the second emotion I felt was relief. I was so relieved something could be done, and I didn’t care how Elodie came home. Just as long as she came home because what they were proposing was far better than what I had been preparing for. I had no idea what Elodie was going to be like, and I had no idea how this would impact our lives, but it was a step we had to take, whether we liked it or not.

Courtesy of Grace

When I got back to her bedside, she looked completely powerless. They had nicknamed Elodie ‘The Firecracker’ because she would fight the nurses so much. But at this point, Elodie had lost her fight. We missed her so much, and all we could do for her was be by her side and hold her hand. She was transferred to a different hospital and was fitted with a tracheostomy the following day. After Elodie’s tracheostomy, the surgeon said, ‘You can see her beautiful face now,’ because she had all the awful tapes and tubes off of her face. As soon as Elodie was fitted with her tracheostomy, it was like a cloud had been lifted.

Nurses and doctors started to say she was doing well, and we were no longer waking up to scary phone calls. Day by day, we got more of her back. The recovery was long and rough, but she hit every milestone. Elodie had to teach herself how to walk, talk, and eat again. We were lucky enough one of her airways improved and she was able to breathe without a ventilator, and Elodie had no problems eating. Luckily, we were able to hear her voice again through her using a speaking valve. We are 6 months into tracheostomy life, and yes, it is an emotional rollercoaster.

Courtesy of Grace

We have experienced massive lows, but because of this we also experience massive highs when she gets better. But still, the pain of what she’s been through is unbearable. I always say every day she is better than the last, and bringing her home after 2 months in the hospital were the best days of my life. If any parent ever finds themselves down a path like this, the one thing I wish I could do is to turn back time and tell myself everything is going to be okay. I had no idea what a tracheostomy was before I was faced with my daughter needing one. I am completely grateful to the little tube in her neck. It saved her life.

Courtesy of Grace

Elodie is an inspiration to everyone she meets. She has fully accepted her tracheostomy is a part of her now. She has completely resumed her life and hasn’t let her tracheostomy hold her back in any way. We are so proud of her, and every time I look at her, my heart bursts with pride. We feel incredibly grateful to where Elodie is now, and consultants are confident through time and growth, Elodie’s airways will strengthen and she’ll make a full recovery and be able to have her tracheostomy removed.

Courtesy of Grace

I don’t see Elodie as disabled. I just see my brave daughter; nothing will ever change this. This was what I feared the most, that she wouldn’t be the same. But nothing will take your children away from being them. I felt like I took everything for granted. But after the trauma we went through and came out the other side of, I see life so differently. I will never take the small things for granted again. I love Elodie more than I ever thought I could, and every day she makes me proud.”

Courtesy of Grace

This story was submitted to Love What Matters by Grace from the UK. You can follow their journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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