When we went for Shalome’s twenty week scan the doctors told us that she had severe brain abnormalities and her life was likely to be incompatible outside the womb. When you receive that kind of news you’re unsure what to do and really where to turn to.
A week later we went back for a second scan and were told there was more brain activity apparent, meaning Shalome could potentially survive, but even if she did she may be in a vegetative state and live until she was nine or ten years old.
Shortly after this we moved from Birmingham to Huddersfield. We were just leaving the hospital after another of our appointments when a screening nurse came running down the corridor telling us to get in touch with Forget Me Not Children’s Hospice.
Before we had chance to contact them, Emma Bleasdale (neonatal care coordinator) gave us a call and we booked in for a visit to Russell House.
It was a Saturday morning in September when we arrived at Russell House and after being shown all of the facilities and meeting the staff we were overwhelmed. The whole place was absolutely fantastic.
The visit really gave us hope and something positive to look forward to in a period of our lives where every single medical experience that we had was just bad news; we had got the spring back in our step and we were finally able to look forward to the rest of the pregnancy with excitement.
The input of Forget Me Not prior to Shalome’s birth really made a huge difference to our lives. We could visit Russell House whenever we wanted to, our parents even came for a look around, we had complementary therapy, art therapy and just felt at home.
All meetings and appointments with doctors and healthcare professionals were arranged for us at the hospice, it really did take the weight off our shoulders.
We knew that when it came to Shalome’s birth, whatever happened, we wanted to get transferred to Russell House as soon as possible.
The day arrived and Shalome defied the odds, surviving the birth with little fight for life needed; two hours later we had arrived at the hospice. We spent a full week at Russell House receiving respite care and making memories which will last a lifetime.
On the first day we stayed over all of our direct family came to the hospice to meet Shalome and they too fell in love both with Shalome and the place after being taken aback by the fantastic facilities on hand.
Throughout the week we did a number of memory making activities including foot painting and clay prints, we wrote a lullaby with the support of the music therapist, received complementary therapy and were cooked for every day. Knowing we were in safe hands really did come as a huge relief to us all and we are so thankful for the support.
If we had remained in the hospital Shalome would likely have been taken away for more and more tests, we wouldn’t have been able to stay together through the night and the chance for family members to properly bond with Shalome just wouldn’t have been possible.
More recently we have attended a parent’s coffee morning at Russell House as well as the family Christmas party; two great events which gave us the opportunity to meet other families in similar positions to us but also giving us a chance to once again relax and have a bit of fun.
The support from Forget Me Not Children’s Hospice really does mean the world to us, it is irreplaceable. Having 24-hour access to the care team, knowing we can pick up the phone at any time day or night and knowing a helping voice will be there is amazing.
It’s not 999, it’s not intensive, it’s palliative and it is exactly how we want it.
Shalome’s Story was first published on the Forget Me Not Children’s Hospice website and is republished here with permission.