living with Pulmonary Hypertension

Gabrielle

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My beloved daughter Gabrielle was diagnosed with PPH on 10 February 2005. She sadly died 10 days later, aged 17 months, at Great Ormond Street Hospital (GOSH). I miss my daughter every second of every day and every night. I once read:

“…a child’s death is a dark stone dropped in the pool of your life. Ripples spread everywhere: no part of you is spared. When you lose a child your losses are just beginning. You lose a piece of yourself. You lose your illusions. You lose reason and predictability; all the order falls out of the universe and you lose your future.”

This is all true. A piece of me died when Gabrielle died and it will remain dead forever. It is with great caution that I write this article. I don’t want to cause pain, sadness or panic to any parent reading this who has a child diagnosed with PH. It is so important to remember that the disease is highly individual. It has many different causes and outcomes, many of which are unexplained. There are many children diagnosed with PH who have the disease under control through the various treatments available. There may also be the possibility of a cure in the future.

After losing Gabrielle, my husband and I wanted to do something which would make her proud of us. We therefore formed a committee with some great friends to plan some fundraising events. We organised events such as a five-aside football tournament, a golf day, a winter and summer ball as well as other events.

I must say it was extremely stressful at times organising such events and it didn’t help that I was pregnant with my second child. However, after each event we felt very proud of ourselves. We also felt sure that Gabrielle would be very proud of her mummy and daddy. Over the twelve-month period we raised £39,363.99, which we split between the
PHA-UK (£28,252.50) and the Sick Children’s Trust (£11,111.49).

We now have two beautiful sons, Jacob who’s 14 months old and Joseph who’s 2 months old, so we certainly have our work cut out. However, they bring true happiness to our lives. Jacob looks very much like Gabrielle. We’d like to adopt a daughter but intend to wait until our sons are a little older. Again, I feel that Gabrielle will be very proud if we adopt a child. It will be something positive that comes out of something devastating.

I want to thank the team at GOSH for doing all they could for Gabrielle. I would also like to thank Kay Yeowart for all the support and kind words she has given me since we lost Gabrielle.

Shellie Rhodes

If you’d like to contact Shellie about her article, she’d be happy to hear from you. Email shellie6673@aol.com

Last medically reviewed: December, 2015 • Due for review: December, 2018