The parents of a baby with a rare condition who is amazing medics with her progress have spoken of the “irreplaceable” support provided by a Yorkshire children’s hospice.
Shalome Harwood’s parents were initially told she was unlikely to survive birth, and then that even if she did, doctors were not sure how long she would live.
Now 12 weeks old, Shalome has surprised experts - with parents Colin and Emma-Jayne Harwood calling her their “little fighter”.
The couple say Forget Me Not Children’s Hospice has enabled them to create precious memories and its team have become a second family since Shalome’s birth.
Her family are now backing a new fundraising appeal by the Halifax Courier and its sister papers in Johnston Press Yorkshire, to collect £30,000 for the three Yorkshire children’s hospices, including Forget Me Not.
Mr Harwood, who is originally from Ovenden, said: “The support from the 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.
“Although Shalome is waiting for MRI results to further inform us of her condition, she is amazing everyone with her ability to feed, maintain eye contact and develop her motor skills.”
At the 20-week scan during Mrs Harwood’s pregnancy, the couple were given the devastating news that their baby 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,” said Mrs Harwood, 34. “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 only live until she was nine or 10 years old.”
Soon afterwards, the couple moved from Birmingham to Huddersfield, and as they were leaving another hospital appointment a nurse ran after them to tell them about Forget Me Not. At a tour of the hospice, Russell House, they were “overwhelmed”.
“The whole place was absolutely fantastic,” said Mr Harwood. “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.”
Before Shalome was born in November last year, their family visited the hospice, and her parents had complementary and art therapy. All medical appointments took place there, which they said took the weight off their shoulders.
Shalome has semi lobar holoprosencephaly, a severe condition which has affected the development of her brain and means she has the minimum brain capacity needed for survival.
On their first day at the hospice, her close family came to meet her. “They too fell in love both with Shalome and the place after being taken aback by the fantastic facilities,” Mr Harwood said.
Throughout the week, the couple were able to make clay footprints, wrote a lullaby with 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,” Mrs Harwood added. “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 her just wouldn’t have been possible.”
Mr Harwood said the hospice team meant so much to them, adding: “We have a second family. And we have absolute peace of mind that no matter what the situation or query, we have 24-7 access to professional help - that’s comfort care in itself.”