My six year old son, Adam, has already had two open heart surgeries due to a congenital heart defect and my daughter, Aimee, is currently in hospital due to a chronic pain condition. We’ve spent a lot of time in and out of Leeds Children’s Hospital but Eckersley House has always supported us.
In 2014 at my 20 week scan it was discovered that Adam had a condition called Truncus arteriosus, an issue with the blood vessels in his heart. Rather than having two, he had one as the aorta and the pulmonary artery had failed to separate while he was developing in the womb. This prevents blood to pump around the body correctly with a lot of it flowing back into the lungs. We were told that Adam would need major heart surgery within the first eight weeks of his life to help the blood flow around his body before irreversible damage could be caused to his heart and lungs.
We were only at home for six days and then Adam wasn’t feeding or breathing properly as he was so fatigued, sleeping for 20 hours a day. He was admitted to the High Dependency Unit (HDU) where he was given treatment to help his breathing and a nasojejunal feeding tube (NG) so he could gain some weight. At 23 days old Adam went into theatre for the surgery on his heart to have a conduit tube fitting to form his missing pulmonary artery, but while Adam was recovering on the HDU my husband, Mark, and I were not allowed to sleep on the ward. Fortunately we had been introduced to Eckersley House, ran by The Sick Children’s Trust, and put on the waiting list for a room there. I was relieved when the ward staff told us a room had opened up. It was so great for us to be able to get out of the hospital while still only being across the road. We had our own space to process everything that had happened and it gave us a place where Adam’s sister, Aimee, could also come and stay which she did during the school holidays. It gave us some sense of normality being able to stay together for those seven days. We were desperate to be a family and Eckersley House made that a possibility.
“Eckersley House gave us that support and time away so we could come back stronger for Adam. It was especially important for me when Mark was back at home and I was at the house on my own.”
Over the next few years we had a few trips to Leeds as Adam had issues with his breathing and heart rate, he also needed the conduit he’d had inserted in his heart replacing. With the surgery scheduled back in Leeds we knew we were going to be in a similar position as before. I spoke to Jane, the House Manager at Eckersley House, to see if we could be put on the waiting list well in advance. Jane was absolutely amazing and was really accommodating arranging everything for us so we knew we had somewhere to stay again. It was incredible being able to return to Eckersley House. I didn’t have to worry about what we were going to do or where we were going to stay. We could be with Adam the night before his surgery on the ward, but we knew once he was on the Paediatric Intensive Care Unit that we couldn’t stay with him. Eckersley House took all that worry away again and having the phone in the room meant the hospital could speak to us at any point. Adam’s surgery was seven hours long. We would have just worried at the hospital so moving into Eckersley House that day was a welcome distraction and really important for us.
It was lovely to be sharing the house with the other families as well who had their own child in the hospital as we could all support each other and we made some lifelong friendships. Being able to spend some time in the communal areas, cooking together and having some laughs when we could made such a massive difference. While your child is in intensive care they are being looked after as much as possible by the nurses and doctors, but it is equally important for parents to look after themselves. Eckersley House gave us that support and time away so we could come back stronger for Adam. It was especially important for me when Mark was back at home and I was at the house on my own.
Everything went completely to plan with the surgery and his recovery and we were able to return home shortly after. Adam is doing really well now and he’s full of energy running around and living a very active life. He will need further surgery when he’s a teenager to replace his conduit again as well as being monitored throughout his life so there will always be the potential for more surgery, but hopefully this will be the final conduit he will need.
2020 brought a lot of things to the world, but we didn’t think we’d be back at Leeds Children’s Hospital or Eckersley House, but it happened and I am still here now, this time with my 14 year old daughter Aimee. Aimee has a long history of chronic pain which she has suffered with for the last seven years. She had bad spells in the past where her knees would lock up and cause a lot of pain as well as sharp pain up her legs. There aren’t many treatment options and we have tried to manage it at home as best as possible. Last year it got worse though, Aimee would be screaming and writhing in pain especially at night. We continued to try and manage this at home, but it wasn’t getting any better and after five days of no improvement we went to hospital. She was diagnosed with Complex Regional Pain Syndrome (CRPS) which causes the brain and nerves to make you feel like you are in great pain at the slightest touch even though there isn’t actually anything wrong. This is mainly located along her legs and Aimee has described the pain as being so bad that the wind can feel like a blow torch and water like acid.
Unfortunately there are no cures for this condition and because it is neurological, pain relief medications have no effect and can actually make it worse. We were told to limit any contact on Aimee’s legs when these flare ups occur and were given some mental health treatment options to try and prevent the pain from happening.
In September, Aimee started to experience really bad stomach ache whenever she was eating or drinking. It was so intense that she stopped eating and drinking and as a result she lost a lot of weight and became dehydrated. It got so bad that she was admitted to hospital again because she was so malnourished. Aimee was put on a nasogastric feeding tube where a line is put straight into your stomach so you don’t have swallow food and water. We stayed at Leeds until November so that Aimee could get back to a healthy weight and was well enough to go home. She still had the pain but no longer wanted to be in hospital so we went home and continued the tube feeding there.
“Eckersley House has been an absolute blessing again. It was so needed, not only for us to have a break from the hospital but also so Aimee could have some time to herself. She’s a teenage girl and she needs to have her own space and without Eckersley House it wouldn’t be possible.”
Throughout November things just got worse again, she was eating less and less. As she is older and aware of how everything works so she was turning off the tube feeds whenever the pain got too much. It was horrible for her because anything that was going into her stomach was causing so much pain, but of course she couldn’t survive on the small amounts off food she was able to tolerate. We returned to the hospital to explain that the problem wasn’t getting any better even with the tube feed. After being readmitted at the end of December they changed Aimee’s tube feed to an nasojejunal tube which is inserted into the intestines to bypass the stomach.
It is possible for CRPS to spread to other parts of the body although this is rare so the doctors are trying to work out if it is linked to that or an abdominal problem. Aimee has a huge team of specialists to help manage her CRPS and they are currently working with a second team at Great Ormond Street Hospital.
We were given a room at the beginning of January at Eckersley House and it has been an absolute blessing. It was so needed, not only for us to have a break from the hospital but also so Aimee could have some time to herself. She’s a teenage girl and doesn’t want or need her parents around her 24/7, she needs to have her own space and without Eckersley House it wouldn’t be possible.
When Adam was a baby it was more about us so that we could always be with him and also have a break from the hospital, but this time there is much more of balance. Aimee can have some quiet time but when things get really bad and she needs me I can be there straight away instead of driving 25 minutes from our home. It’s much more about managing her needs as well as our own. Mark and I split our time between the hospital and home now so that we can both look after Adam and Aimee. That’s been important so we can keep some normality for Adam who is still young.
It’s a really tough time for Aimee as there are very limited options to try and manage her pain and she is struggling to understand why no one can really help her. There are options for her to have nerve blockers such as an epidural or ketamine infusions but this will only give her a break from the pain for the maximum of a month. Her pain could also come back worse when these drugs wear off so her medical team are hesitant to try them at the moment with the risks out weighing the benefits. We are currently continuing with desensitisation therapy, where you teach the brain that certain materials aren’t a cause of pain, hydrotherapy once a week and focusing on her mental health. As I’m sure you can imagine this is very hard for Aimee to live with, but we’re trying our best to keep a positive outlook. We’ll hopefully be having a meeting with her team soon to at least make a plan of action and know our options which might include a surgical device being fitted to take over from the tube feeds. For now though we just have to wait and see but we’re so grateful to have Eckersley House so that we can always be with her.
Sara Worker, Aimee and Adam’s mum
