When we saw Abby’s art up for auction we couldn’t resist bidding for it. Abby has been through a lot in her young life but has battled through. Abby has faced numerous operations and is facing at least six more procedures. She has to use a wheelchair when the family goes out and about, but as her condition is deteriorating she will have to use her wheelchair indoors too in future. Abby, and her mother Carina, are doing all they can to raise money to adapt their home to make it wheelchair accessible. Carina says, “It would hugely benefit Abby if we were able to adapt the downstairs space of our home to create a downstairs bedroom as well as more space to meet Abby’s needs.”
Abby was born in 2008 with a rare genetic condition called Autosomal recessive polycystic kidney disease (ARPKD for short). Its condition primarily affects the kidneys but can also cause issues with the liver and occasionally other organs. Our first daughter passed away from the same condition at just 3 days old in 2002, we have five children, Abby is one of a twin, her twin is completely healthy as are her older brothers and younger sister.
After the birth of Abby and her twin brother Abby went straight into intensive care where she required ventilation support for her breathing as her kidneys were so large it meant her lungs were squashed which compromised her breathing, she remained there for two weeks and after successfully being weaned from ventilation she was transferred to the renal ward at Bristol children’s hospital where she remained for a further eight weeks, the first years of Abby’s life were unfortunately spent more in hospital than at home, she relied on various amounts of medication and was tube fed. She was very prone to infection and has battled sepsis among many other nasty infections. Towards the end of 2013, Abby was having worrying issues with her blood pressure, which was extremely high. The only way to bring it to an acceptable level was to introduce a medication that sadly impacted Abby’s kidney function further. Abby needed a liver and kidney transplant. On Boxing Day 2013 she was placed on the organ transplant list and we waited….
Too unstable for surgery
Sadly Abby became more poorly and was suspended from the transplant list as it wasn’t safe enough to put her through the gruelling surgery. The renal team tried to stabilise her by introducing dialysis to help Abby’s kidney function and get her to a ‘safe point’. Abby had a line fitted into the artery in her chest area to be able to administer the dialysis.
Abby was placed onto the transplant list three times in total and suspended twice due to being too unstable for surgery, In March 2014 we received the call to say they had a potential liver and kidney donor match for Abby. It was a huge mixture of emotions. We had to literally drop everything and hit the road. Abby, my husband, Andy, and I drove from Bristol to Birmingham where Abby’s transplant was due to take place. We arrived at the ward and Abby underwent various medical checks. We had an agonising wait to see if the organs were viable; more importantly, the surgeons were trying to split the liver for an older gentleman to also receive a transplant. At 6 am the following day we were told everything was good and she could have her transplant. At this point, Abby’s kidney function was just 12%. Placing her in the arms of the surgeon and handing her to the medical team was one of the hardest things we’ve ever had to do. Not knowing what the outcome was going to be was terrible. It was now just a case of waiting. Halfway through the operation, we had an update to say the liver had been transplanted. ten hours later Abby was out of surgery and taken to the intensive care ward where she stayed for nearly two weeks. Again, Abby struggled to maintain her breathing and we nearly lost her BUT she battled on. Eventually, on day twelve Abby was weaned from all ventilation and sedation. She had a long recovery ahead but we had our girl. And she said ‘Mummy’ for the first time in 2 weeks which was just magical! As incredible as organ transplantation is, it isn’t a cure it’s a treatment. And there are risks involved. Abby experienced some rejection early on, but was admitted to hospital for high doses of steroids and thankfully the rejection was treated.
Struggling with mobility
Fast forward a couple of years we noticed Abby was struggling with her mobility. Her ankles were deformed and her walking was impacted significantly. She was given an appointment with the orthopaedic surgeon and after X rays she was diagnosed with growth plate disturbance in her ankles. Abby received surgery on her right ankle in 2019. Her recovery was gruelling and was a really tough time physically, emotionally and mentally. But as always she battled through. We were aware that the left ankle would require the same surgery at some point when Abby felt ready; unfortunately, Covid struck and due to Abby’s vulnerability surgery was postponed. Abby started to suffer pain in her wrists and knees so I requested an appointment with her orthopaedic consultant. Further X rays have revealed extensive bone disease and damage to growth plates in her knees and wrists along with cartilage deformity. Abby will require at least six more surgeries on her legs to help ease the pain and hopefully improve mobility into the future. Every surgery has its risks and the impact of these means Abby may suffer from arthritis further into the future. Abby is already reliant on her wheelchair whenever we go out but will also be reliant on her wheelchair indoors for the foreseeable future.
For now, she has been placed on the urgent list for her first surgery so again we wait.
Abby is the most beautiful, loving, kind little girl with some serious fight in her and I am incredibly proud to be her mum.
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