Please take a few minutes to ready the story of Avalyn who attends Kickers at The Village Hotel South Leeds, and her journey with The Children's Heart Surgery Fund. It highlights perfectly what an amazing support to families this charity is ...
"Avalyn May Mellor was born on the 12th May 2018 at the LGI to a room full of doctors who have looked after her, loved and cared for her ever since. At just 16 months old she has already endured 2 lots of life saving open heart surgery by the incredible Miss Van Doorn. To meet her now you would never know, especially when you see her splashing about in the pool at her Puddle Ducks lessons!
We found out that Ava was going to have heart problems when I was 20 weeks pregnant. I had had my normal 20 week scan on the Friday but had an extra heart scan on the Monday due to some family history but my pregnancy was still classed as really low risk for any problems and the consultant at Pinderfields had even suggested it wasn’t necessary but was our choice if we wanted the scan as an extra precaution. We went to the scan feeling very confident, we even took our little boy Ethan with us so he could hear his new baby brother or sisters heart beat for the first time. About half way through the scan, the Sonographer let us know that she had found some problems but that she believed they were all fixable and a consultant cardiologist would come to speak to us shortly. We were taken to wait in a room next door. It felt like forever waiting for the consultant but actually it wasn’t long, having Ethan there helped us both hold it together for the most part. Dr Hares came and explained to us that there were 3 major problems with Ava’s heart, the left side was significantly smaller than the right side, her aorta was too narrow and she had a large hole between her ventricles. He explained that without surgery soon after birth she wouldn’t survive. However that with surgery he hoped that she would be able to lead a relatively normal life.
The next 19 weeks of pregnancy was a bit of a blur filled with mixed emotions of excitement of meeting our new baby and gut wrenching fear for what would happen to her when she was out of the safety of my belly. Dr Barwick took over as our consultant and we saw her at least once a month to check in on how things were going. She and Elaine, our cardiac liaison nurse, worked hard to keep us positive and enjoying as much of pregnancy as we could. We also received counselling and had a specialist midwife and Fetal medicine scans to ensure that myself, Joe, Ethan and our new baby were all supported and well looked after throughout. We were even given a little sticker book from the CHSF to help explain to Ethan that his baby sister had a special heart that would need looking after"
Ava had to have a planned induced birth at between 38 and 39 weeks to ensure she was delivered safely and put straight on medicine to keep a duct open in her heart. Ava needed to keep the duct open to help her heart pump the blood round her body. When she was born she was a whopping 7lb 13oz rosey little lump! No one could believe how big she was! As she was born nice and pink and not blue I was able to have a couple of minutes to cuddle her before she was whisked away with my husband to neonatal to be looked after. In neonatal she was given 2 cannulas to give her the Prostin to keep the duct open... this medicine basically kept her alive until she was able to have surgery. She was also hooked up to some machines to monitor her heart rate and oxygen saturation. At first this was a very daunting sight. The neonatal doctors and nurses were so gentle and took the time to help us feel comfortable to touch Ava and hold her hand. We were eventually able to cuddle her too and after 24 hours she was even able to breastfeed. I had originally been told that there was a chance I wouldn’t be able to feed her until after she’s recovered from her surgery so this was a massive thing for me as it helped to normalise the experience a little bit and definitely helped Ava and I bond.
We were moved up to ward 51 The children’s heart unit at the LGI after about 36 hours, Ava was put in a cot in the high dependency unit. This strange place became our little home. The doctors and nurses that work on L51 are really special people. They went out of their way to make sure that we enjoyed being new parents again as much as we could amongst the terrifying medical background. They helped us dress Ava, and give her her first bath. They spent time to make small talk and were so gentle when the ‘big talks’ were needed too. We had always been told that we wouldn’t really know the extent of Ava’s problems until she was born and more detailed scans of her heart could be done. It turned out that not only did she have the disproportion in sides, small aorta and the hole in her ventricles, she also had a small valve too. There was a discussion as to whether they were able to do the planned surgery as there was a worry that she may actually have a different condition that was life limiting and would mean that they could potentially only save half her heart. We had to wait over night for a meeting to take place between all the cardiac consultants for them to decide the best course of action. It was decided that they could safely proceed with the original plan to do a double ventricle repair which would save her whole heart. This meant that they would have to widen her aorta with a patch, put a band around her pulmonary artery to narrow it to slow down the flow of blood to her lungs. They would then have to do a second lot of surgery in 6-12 months in which they would remove the band from the pulmonary artery and close the hole between the 2 ventricles. It was an awful lot to take in and we felt like we were on a constant rollercoaster of massive highs when we were able to share a bit of ‘normal’ with her and then awful lows when the reality of what she would have to endure became clear. She was booked in to have her surgery as soon as possible. This took place at 8 days old.
I can’t convey in words what that day was like. To hand your new born baby over to someone that you have only met a handful of times but trust implicitly. To know that they will stop your baby’s heart and connect her to a machine that will pump her blood around her body. To know that they will have to open her chest to perform intricate surgery on her heart which is only the size of a strawberry. To just sit by the phone hoping with every fibre of your body, heart and soul that they will be able to restart her heart and ventilate her to get her to intensive care where the next part of recovery begins. It took almost 6 hours for the phone to ring to say that her surgery had been a success and that she was in intensive care. We were able to see her about an hour after that. The next 24 hours were a critical period to see if she was able to come off of the ventilator and breath for herself and cope with the change in circulation. Ava continued to fight and she was moved back to HDU on L51 within 24 hours. It was still a dangerous time for her but it felt so good to be back in our little ‘home’.
A day after her operation Lisa Williams from the heart surgery fund came to see Avalyn with her very own Katy bear and a medal and certificate. It was such a lovely touch, and it meant so much to us as a family. Lisa explained that the CHSF help to support children and their families that have been through heart surgery, they provide vital life saving equipment such as the ventilators that Ava had needed to be able to breath after her surgery. They had funded the hospital accommodation that myself and my husband had been able to stay in so that we could be with Ava day and night, so that I could pump and breastfeed Ava during her stay in hospital. They helped pay for training for the staff on L51 to ensure that Ava had had the best care possible. They’d even recently funded a 3D printer that created models of the children’s hearts so that the surgeons could ‘practice’ complex operations. They also organised regular family events that we were immediately invited to to help us meet other families that had been through similar experiences to ourselves. It became clear that without the help of the CHSF the LGI wouldn’t have been able to give Ava the outstanding care that she received.
Unbelievably Ava was discharged from hospital just 5 days after her surgery. And at 13 days old she was finally home.
The time in between Ava coming home and her second surgery was a little surreal. I wasn’t really able to relax with her knowing that we were only part way through this journey. I really wanted her to do ‘normal’ baby things but I found it very difficult to actually do. Our lives felt so far from normal I felt it so difficult to relate to the normal goings on of mum and baby groups and I was terrified of Ava becoming ill and her heart not being able to cope.
Ava’s second surgery came as a bit of a surprise. We went to an appointment the beginning of December expecting it to be her normal check up and we were told that she would be having surgery in the next couple of weeks. After the initial head spin we both embraced the fact that she could potentially be home and recovered for Christmas. However unfortunately it was not meant to be! Ava caught a cold just before her surgery date and it was deemed to risky to operate. We then had over 4 weeks of self inflicted quarantine in which none of us left the house in order to ensure she was fit and well for her surgery as soon as the next date was available. This meant a very different Christmas and new year for our little family fuelled by a lot of internet shopping! We embraced having a lot of family time together knowing that once again we would all be split up again when Ava did go in for her surgery.
Ava’s second surgery finally went ahead on the 4th January 2019. It was no more or less traumatic than the first time around but came laden with different fears and anticipation of knowing what was to come. What really helped us through was to be back in our home from home in L51. Everyone remembered Ava from almost 8 months before which we couldn’t believe, it felt like being wrapped up in a security blanket whilst the chaos floated by around us.
Avalyn’s second surgery was very successful, they found that they were just able to remove the band from her pulmonary artery as her heart had built up muscle that had blocked the hole between her ventricles meaning it no longer needed repairing... just another example of how amazing our little girl really is. Ava’s recovery from her second surgery was much harder, when her chest drain was removed on day 3 her whole lung collapsed meaning that we almost lost her and she had to be taken for emergency surgery to put another drain in. Even after all this Ava was still home within a week! Our little resilient girl and her team of heart warriors did it again!
I don’t think you need experiences like this to love and appreciate your children, I’ve always known how lucky I was to be a mum but going through this with Ava has really made me appreciate all the little things just that little bit more. All those ‘normals’ that I don’t think I really realised how special they were with Ethan. I enjoyed them with him but I don’t think I noticed them in the same way I do with Ava. The first time I took Ethan swimming he was 4 weeks old and I loved it, I really enjoyed being in the water with him and doing an activity that I knew was so good for both of us. It was something that I wasn’t sure if we’d ever be able to do with Ava. Her first time in the water was one of the best memories I have of us as a family. It felt like such an achievement to all be in the swimming pool together messing about. What a journey we had been on to get to this simple moment... I enrolled Ava for swimming lessons with Puddle Ducks straight away. We both love it and look forward to it every week. Ava is a very spirited little girl, and that’s what has got her through. Sometimes she shouts at me if I try to put her on my back to swim or she’ll get cross if I throw the duck for her to chase rather than let her chew on it. The next moment she’s bubbling with giggles as she gets bounced out the water. She absolutely loves jumping in and is certainly going to be a total dare devil! These are the moments that I love the most and that make me feel grateful for the journey we’ve had. Avalyn is living proof that the highs are worth the lows and we find highs in places that I never knew to look for them before. As a family we all know we wouldn’t have any of this without all the staff at the LGI especially the doctors and nurses on ward 51, our consultant Dr Barwick and surgeon Miss Van Doorn. The work that the CHSF does makes all this possible and we will be forever grateful for everything they do and continue to do to keep our little family happy and healthy and loving life"
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