Parents of a baby born with a half a working heart, among other heart defects, have praised St Oswald’s Hospice, based in Gosforth, for their care and support during a difficult year.
This Hospice Care Week (8th – 14th October) Danyl O’Shaughnessy will celebrate his first birthday, despite his parents being told by doctors he would only survive four to six weeks, due to his severe, inoperable heart condition.
Before Danyl was born, plans were being put in place for the family to spend time at St Oswald’s Children’s Hospice for end of life care. Against all odds, Danyl didn’t need to go to St Oswald’s and the family continues to benefit from the support of the Hospice’s Family Support Team.
Whilst Danyl’s twin brother, Dylan, was born a healthy baby, Danyl has Hypoplastic Left Heart Syndrome, a condition which is often known as a half a heart and is one of the most severe heart defects there is. Danyl has Hypoplastic Left Heart Syndrome alongside other defects and total heart block.
Danyl’s dad Kevin explains more about his son’s condition and the support the whole family has received from St Oswald’s Hospice:
“In April 2016, my wife Danielle and I received the very unexpected news that Danielle was pregnant with twins. Everything was going just as planned until June 2017 we found out that one of the twins had a severe heart defect. No one could tell us how it happened, why it happened or how it could have been prevented. We quickly realised we were on a very lonely, scary path where very few of our questions could be answered. We had to listen to some awful things and make life changing decisions based on what little information we had, with the added pressure of our already horrific situation, being a twin pregnancy and knowing every decision we made had a direct impact on both twins.
“This is when St Oswald’s stepped in. Our initial plan was for Dylan and Danyl to be born in hospital and within days go to St Oswald’s Children’s Hospice for palliative care, but he’s a fighter and after birth we were told we could go home for a few weeks, and we are so lucky that he’s still with us a year later.
“Staff at St Oswald’s provided pre-bereavement and ongoing support for the whole family, including me and Danielle, Danyl’s twin Dylan and their older brother Oliver. The family support team has helped us to talk about what might happen to Danyl. St. Oswald’s have also provided training for Danielle’s work colleagues and they plan to provide training for the school that Oliver is due to attend. We haven’t been to see the team in a little while because Danyl is relatively stable but we know they are there for us if and when we need them – the support is fantastic.”
Talking about the future, Kevin ended:
“As the twins’ first birthday is approaching and Danyl is doing well we are going to continue taking every day as it comes and look for little positives. We attend lots of appointments and I’m lucky as my employer completely understands when I need to take time off and is very supportive. But there is no denying that we are on a terribly hard path. There are times when Danielle and I haven’t slept in case we missed a single second with the twins and there have been times when we have been tested beyond belief but we try and remain positive and intend to keep life as ‘normal’ as we can for the whole family. We want all our boys to remember their time together as a happy, fun time and as difficult as that is for us to do, everything we do is for them.
“As a couple Danielle and I never ever thought we would have twins or ever have to deal with what we have faced over the last year but St Oswald’s have been there every step of the way, please support them in whatever way you can this Hospice Care Week.”
Danielle, Kevin’s wife, works at Crookhill Primary School who are fundraising for St Oswald’s to thank the Hospice for their support to the family. To donate to the Justgiving page visit https://www.justgiving.com/fundraising/crookhillprimaryschool
Supporters from across the North East are encouraged to get involved with Hospice Care Week, using #HeartMyHospice to share their experiences of the care and support them and their family and friends have received from St Oswald’s. You can tag St Oswald’s in your experiences on Facebook /stoswaldshospice and Twitter @stoswaldsuk, or pop in to your local St Oswald’s Hospice shop to get involved with their Hospice Care Week activities.