Henry’s story – so far…

This is Henry, our first child. 11 months on from his birth, he is a happy, energetic, and chatty baby. As parents we could not be prouder of how much courage and strength Henry has shown to defy the odds. But it has not been an easy ride.

Henry was born 3 months early when Caroline went into spontaneous labour without any warning or concerns from antenatal scans.

It’s a very scary thing to go through as parents, a child being born this early is right on the cusp of viability. With extreme prematurity comes a lot of health complications. The first weeks and months are critical to carry on developing outside the body. In total, Henry spent almost 5 months in Neonatal Intensive Care (NICU), including five surgeries for his bowel, eyes, and heart.

At the time of Henry’s birth we were away from home between Christmas and New Year in Wales. We spent January – March living in Liverpool, staying between hospital cubicles, AirBnB, and Ronald McDonald House. This was a very difficult time being away from home, far from family and friends, our dog staying with another family, and learning the ropes of parenting in a very challenging way.

Henry fought extremely hard, and as much as we could we never left his side, often spending 12-15 hours a day cot side getting involved in as much of Henry’s care as possible. You can’t sleep in a NICU as much as parents would try – leaving each day to get some sleep felt impossible.

But, we dug deep, and with the dedication of the NICU team and surgeons at Alder Hey, Henry’s condition became less critical.

Henry and Caroline were then flown from Liverpool to Biggin Hill, and Henry spent another three months closer to home in Brighton NICU and Royal Alex Surgical Ward. At the end of June we were able to come home as a family for the first time. This was an incredible moment, something that previously we would have taken for granted.

Unfortunately, the story doesn’t end there…Henry sustained a serious brain injury during one of the surgeries. The long-short of it is that we don’t know fully what this means for his future, and our family. Experts from physiotherapy to neurology focus on treating the patient as they present, and not just what scans might indicate. So, we are throwing ourselves fully into a busy schedule of development and fun to achieve Henry’s full potential – and he is making slow but steady progress.

Horsham Fitness and our chosen charity

Horsham Fitness continues to be an outstanding community, not just a fitness class.

Since returning to classes in April, the level of kindness and support from Katie, Don, Julie, Emily, and the members that know about our story has been so uplifting. Offers to walk our dog, come for a cup of tea, and even do our washing. Most of all the understanding and encouragement to keep doing our best for Henry and care for ourselves. Thank you to everyone.

We were very touched when Katie and Don asked us if we would like to nominate a charity for this years’ HF Christmas Charity Challenge. In past years’ we have felt the connection that members’ personal stories bring to the community spirit throughout the year, as well as the celebration of personal achievement and overcoming adversity at the charity event.

We have been supported directly and indirectly by many charities whilst Henry was admitted in hospital which are all deserving of more funding. However, there is one charity that is truly extraordinary for families that find themselves in positions like ours -- Chestnut Tree House.

Whilst Chestnut Tree House is a children’s hospice, its primary purpose it to enhance children’s lives, which ranges from sensory experiences, hydrotherapy, parent and family respite, psychological support, and end of life care. It is hard to find words that describe what it is like at Chestnut Tree House as a parent, and it really is more of a feeling of being at ease despite all the uncertainty, grief, and stress you have. And for children it is a lot of fun, facilities, activities, and grounds that are very different from hospital. For Henry, we take him to the baby group ‘Little Squirrels’, will start hydrotherapy soon, and can make use of the sensory rooms and beautiful grounds. We will also start to have a once-a-month home care respite from Henry’s amazing, dedicated Nurse, Justine. This allows us to have some time-off knowing he is totally cared for at home.

What we do - Chestnut Tree House - What is a children's hospice?

If you want to really understand the impact of donating to Chestnut Tree House, please read some of the parent stories: https://www.chestnut-tree-house.org.uk/blog/

To the future – we are very much at the beginning of our journey with Henry, but already know the value of taking as much respite as we can to stay resilient. We are both looking forward to focussing more on self-care and fitness to keep up with Henry. So, if you see Will at a class in the future, ask him to put down the kettle bells and do a few more laps of the field!

Thank you again for all the support this year and support for Chestnut Tree House. You will be making a direct impact to 300 families and children that benefit from the services each year.