Hope with mum Michelle
Little Hope Ward is an inspiration.
Born with Down Syndrome, transient leukaemia, a hole in the heart, joint hypermobility, reduced vision and hearing and having to be fed through a feeding tube, it would have been easy for her family to despair.
Fourteen months ago, Hope’s mum, Michelle, was having a normal pregnancy and birth. Hope was her 11th child and everything seemed to be going to plan.
“All my other babies were born without problems and nothing untoward was expected from my pregnancy with Hope,” explained mum, who lives with her family in central Blackpool.
“Hope was delivered normally with no issues, in fact it was a quick birth,” Michelle explained. “She was delivered looking at me rather than the midwife and I saw the Down mask straight away.”
With the support of Blackpool Victoria Hospital’s Neonatal Unit, Michelle and Hope are now becoming advocates for children with disabilities and are sharing their experiences.
“Hope may not change the world in her lifetime, but she will change opinions,” Michelle said.
“When she was born, Hope could not maintain her temperature and her blood sugars were dropping,” Michelle explained. “She was immediately taken to the Neonatal Unit and did not come off for 21 days. While she was there her care was amazing, I cannot not put into words how wonderful the staff were.
“I always presumed the Special Care Baby Unit or Neonatal Unit was for premature babies, but there was my 7lb 10oz baby in an incubator by the side of a baby who weighed just a few grams.”
Michelle said the medical care was phenomenal. Hope could not have been in a better place for treatment.
“I was lost and bewildered by what had happened to me and my baby, but consultant paediatrician, Dr Alison Simmonett was amazing, she became my rock during that time,” Michelle added.
“She supported me, Hope and my partner, Hope’s dad, Steve. She was so understanding, caring and professional. Having had 10 other babies that I just walked out of hospital with, this was alien to me. I could not feed, bath or even dress my child. I could not understand what had happened.
“The neonatal nurses got me through those first 21 days. Even though I was an experienced mum, I thought Hope was made of sugar paper, she was so fragile, but the staff helped me get over my fears.
“There was no hesitation in the care that Hope received on the Unit, they acted immediately and Hope seemed so important to them. They even cried when she left,” Michelle added.
“I would not have been as secure, strong and as accepting of Hope’s condition without those nurses and doctors. I was very fearful at first. The incubator scared the life out of me, I just felt sick. The Down Syndrome did not bother me so much although I knew she would face all sorts of problems, it was her heart condition and the leukaemia that really worried me.”
Hope still has markers of leukaemia and is being monitored. Her leaky heart valve has closed and the hole in her heart chamber has not altered and is not giving concern at the moment. She still has to use a feeding tube because her windpipe does not close when she eats or drinks.
Hope will probably not be able to walk unaided but she is starting to roll around and has just learnt to sit up on her own. Her upper body core strength is amazing, but her lower body is a problem.
“My advice to any parents who find themselves in a similar situation will be always ask questions, no matter how stupid you think the question might be,” Michelle advised. “The staff have heard the questions before and are able to allay your fears and talk you through them.
“Talk to the professionals and to other mums, don’t try to face this alone, there is always someone to hold your hand and the Neonatal Unit will help get you in touch with the right people.”
Michelle and Hope now attend the Aiming Higher organisation in Blackpool for children with disabilities where they have met other babies with Down Syndrome.
“One of my daughters told me that Hope has super powers. When I asked her what she meant she said that Hope made everyone smile and fall in love with her and I think my daughter was right, Hope does have a super power,” Michelle said.
“Hope will make a difference during her life. She will be an advocate for people like her living with Down Syndrome and other disabilities.
“She might not change the world, but she will change opinions. Hope is on a mission to help others understand and she already has a blog page, a Facebook and Instagram page and has done some modelling to promote disabled children.
“She is also helping other children with their school projects and exams,” Michelle added. “We have visited Unity Academy Child Development GSCE class and she is booked to talk to the school’s Year 11 pupils.
“Hope has found herself on an unexpected journey and if anyone else who has a child with disabilities wants to talk to me about the challenges, I am happy to help. They can contact me through the Neonatal Unit at Blackpool Victoria Hospital.”
Lead Neonatal nurse, Catherine Nash said: “Hope is a beautiful baby girl with lots of character. It was a privilege to be able to care for the whole family at the start of their journey.
“In those first few weeks there were tears, but also some happy first memories, like the time Hope wore her ‘Belle’ princess dress. It is lovely to hear that the support given to Michelle helped make a difference.”