Family Stories - Jack

Family stories from the Myotubular Trust

Family stories from the Myotubular Trust

Family stories from the Myotubular Trust

 

 

What happened to my family is like something you read in a magazine. But it really happened to us. My son, Jack, was born dead. It took the doctors 20 minutes to resuscitate him. It was touch and go – but they did it, Jack did it. From then on we were on the rollercoaster ride of our lives.

We soon found out that Jack was very ill. He had an incredibly rare condition called Myotubular Myopathy. The doctors said he probably wouldn’t live to his first birthday.
We bought Jack home from hospital for the first time when he was six weeks old. My partner, Dave, and I were giving Jack the 24-hour care he needed, and getting by on 4 hours’ sleep a night. After 5 months we had to ask for help. Our community nursing team recommended Chestnut Tree House, the local children’s hospice, so we contacted them and they offered us some respite care.

When you say ‘hospice’ a lot of people imagine a cold, soulless place full of distressed children that have been left to die, but believe me it was nothing like that. When we went for our first visit, I got out of the car and just cried, the beautiful house and grounds are just amazing, and after having spent so long in so many different
hospitals this was a dream. We couldn’t believe that this was where Jack and ourselves could come to stay, a house bigger and more beautiful than any house I’ve ever been to, but a home, warm and inviting.

At Chestnut Tree House, Jack had every nurse’s undivided attention. He just loved it. There was everything there for him, lights, music, and more toys than a toyshop, but most importantly someone to cuddle him.
Jack had five respite visits. He would go when he was well enough and Dave and I would have a couple of days’ rest. It’s hard to describe how important that was. Two days doesn’t make up for six months of sleep deprivation but it was wonderful to spend some time together, go out for a drink and a meal, or watch a film.

We shared some really precious moments together as a family at Chestnut Tree House, like the time Jack went swimming in October for the first and only time in his life. It was Dave’s birthday. It was beautiful and those 30 minutes will live with us forever. We also have the wonderful memories of holding Jack’s christening at Chestnut Tree House on New Years Eve 2006. 35 of our close family and Jack’s godparents were with us to help celebrate this momentous occasion. More treasured memories that Chestnut Tree House gave to us.

Jack’s first birthday was on the 11th January this year. We couldn’t believe we had got this far. That Thursday morning we all woke up and cuddled up in bed together to sing ‘Happy Birthday’, but Jack wasn’t well, he was struggling to breathe and his condition deteriorated quickly. We spoke to Chestnut. They had been on stand by and were ready for us. We started what was to be our last journey to Chestnut Tree House.

When we got there, everything was under control, no panic, just calm, professional caring nurses, who had become our friends. We took Jack to his room and made him comfortable, and that’s were we stayed. Jack died that evening, the evening of his first birthday. Jack couldn’t breathe unaided. He couldn’t swallow or eat. We knew it was time to let Jack go.

Those last 12 hours together were so very special. We were able to have all of his family come see him, sing him ‘happy birthday’, open his birthday cards, give him his balloons, and blow out the candle on the birthday cake that Chestnut had made for him, all the time knowing that someone was around to make sure Jack was
OK.

If the death of your child can ever be beautiful, it was. It felt like it was our time and everything was how we wanted it to be. There were a lot of tears. We knew that Jack was dying, but it was time to let him go. I sat in a room just like any child’s bedroom and held my son in my arms as he died. It was peaceful. No one interfered. It was just us: me, Dave and Jack. When you lose your child like that, you need to know that it is going to be as perfect as possible. You don’t and won’t get a second chance. We had perfection. Of course, everybody should be given that chance. Everybody in that situation deserves the same amazing care that we received.