Martin's Story

As soon as our son Martin was born in November 1992, we immediately knew that something was wrong. His rapid breathing immediately alerted the attention of doctors and Martin was instantly rushed to Alder Hey hospital where he was diagnosed as having ‘Truncus arteriosus’, a rare congenital heart disease. The joy of having our first son quickly turned to terror. Knowing something was wrong made us both feel incredibly vulnerable and helpless. Fortunately after an incredibly shaky start with many scares, including a life-saving heart operation, Martin’s condition improved and we were able to take him home. However we knew that our son would need to have an operation sometime in the future to replace his pulmonary homograph conduit.

Ten years later in 2002, the time came for Martin’s second operation and whilst we had known this was inevitable, the worry and panic remained painfully fresh. Our first concern was how to get to Great Ormond Street Hospital from our home in Hampshire and finding accommodation that would allow us to be close to the ward throughout Martin’s operation. So when we discovered The Sick Children’s Trust, it felt as though a huge weight was lifted from our shoulders. The charity provided us with ‘Home from Home’ accommodation in their Rainbow House that is extremely close to Great Ormond Street.

The staff at Rainbow House were extremely welcoming, especially Sandra the house manager who immediately made us feel more relaxed at this stressful time. Just knowing that we had somewhere close to Martin’s ward where we could eat, wash and unwind was hugely comforting. It was also great for our younger daughter Chloe, who seemed much less worried after we moved into Rainbow House. We remained at this ‘Home from Home’ throughout our son’s recovery and were very grateful for the significant help provided to us by The Sick Children’s Trust.

In August 2010 Martin required a third operation in which a mechanical value would be placed into his heart. We were delighted to be told that Rainbow House had a place available for us once again, so after two expensive nights in a hotel we were back with Sandra in the comfortable and calming environment we had experienced sever years before. Meeting other families in similar situations helped to remove some worries and we all shared our experiences. In Rainbow House we met a couple, Damian and Tina Slack with a daughter, Grace, who was also unwell and we both supported each other through the difficult times. Without the Sick Children’s Trust such support wouldn’t have been there and I feel that we would have felt much more isolated and afraid.

Martin is now doing much better and we are thrilled to have our son in such good spirits, we also are now very good friends with Damian and Tina. We cannot thank The Sick Children’s Trust enough for giving us this vital and continuous support throughout Martin’s operations.

Our little miracle

When I was 20 weeks into my pregnancy, my unborn baby was diagnosed with multiple heart problems. I was told that I would have to be induced a week early and give birth at Leeds General Infirmary (LGI) to be closer to his specialist team rather than at my local hospital, York, near our home in Hemingbrough, Selby.

Vaughn was born 10 March 2010 with an interrupted aortic arch and a large hole in the heart. At just five days old he had his first open heart surgery. During this time, I stayed on the hospital ward and my husband and daughter would come and visit us.

After his first operation we were sent home as everything appeared to be okay, but then during his regular monthly heart scans it became clear that there were further complications. Vaughn was next diagnosed with sub-aortic stenosis. The valve in the main artery which carries blood out of the heart was too small and had a blockage; it also had only two flaps instead of the normal three flaps required function properly. The only possible solution was for Vaughn to undergo a second life-saving open heart operation.

We remained in hospital for over two weeks as Vaughn’s immune system was so low after the surgery that he became ill and his recovery time was impeded. After two weeks we were given the okay to go home, but this happiness didn’t last.

In October the doctors realised that Vaughn would need a third operation. When he was admitted in March 2011 we were informed that, due to this period being the height of the flu season, the ward had had to impose visiting restrictions. This meant Vaughn’s three year old sister wouldn’t be allowed on to ward. For either Simeon or myself to be with Vaughn, Willow would have to stay outside and we would have to find some way to amuse her in a hospital – a hopeless situation and one for which we could see no possible solution. It was then that my husband, Simeon, and I were given the opportunity to stay with The Sick Children’s Trust for 25 days.

We felt so lucky to get a room at Eckersley House, the charity’s ‘Home from Home’ that supports families of children at the LGI, as we had initially been told that we were only going to be in for a short time but Vaughn became ill and had to remain in for a month. We have no family in Selby, so we would have had no one to look after Willow had we had to make that decision to leave her. You can only ask friends to help out for so long. However, because of The Sick Children’s Trust, we thankfully could bring Willow and all stay at the hospital. It was such a relief. We want to keep our family together no matter what, and being at Eckersley House helped us do that. It made a horrible ordeal that little bit better.

Willow loved coming over to the house to play in the playroom and even referred to it as the ‘lady’s house’. I think being here gave her a sense of normality, which was fundamental to her not being too affected by this whole situation. We have always been determined that Vaughn will go through this with his whole family there for him, together. During our stay, we would cook together and sit round the dinner table, making the same meals as we did back home. It enabled us to do many of the small things that keep normal family life together. We even were able to bake a cake for Vaughn to celebrate his first birthday in the hospital.

For me, having my entire family around me kept me sane. Having an outside place away from the hospital to be myself, to be able to retreat to help my mind stay focused on Vaughn and getting him through this. He was just so little and I wanted to do everything I could to protect the newest member of our family. Being at Eckersley House helped Vaughn’s recovery no end. Due to an infection he was isolated to his room after his operation but having myself or his dada by his bedside and his sister waving at him from outside the room really lifted his spirits each day.

It was also positive for us to share what we were going through with the other people we met in the house. Everyone had children in the same position and it somehow helps to know that others know how you feel. Although I have good friends at home in Selby, they could only imagine what I was going through. Talking to other families in the house you could tell they really understood and could give advice.

We are back at home now and he is leading a normal ‘little man’s life,’ starting to walk, playing with his sister, even starting nursery. Such is the strength of his spirit; he recently was awarded the Superkid 2011 overall winner by our local paper. As my husband has stated this is as much of award for all those who have cared for and supported Vaughn: the doctors and nurses, in fact, all the hospital staff and importantly all of our new friends at Eckersley House

But he is not through his ordeals yet - Vaughn requires a complete valve replacement. We are just waiting for him to grow enough so that he can have the next major operation, which could be required at any time, he has regular scans to monitor his heart pressure, and if it gets too high he will have to have an emergency operation just to keep him alive. He will continue to have more operations in the future and probably for the rest of his life, but it’s good to know that when the time comes for us to return to the LGI that we can rely on the support of The Sick Children’s Trust once more.

Rebecca, Vaughn’s mum