A lasting legacy of mental health support for parents who are facing an abnormality diagnosis for their unborn babies is the aim of a crowdfunder launched by Sarah-Jayne Larkins who is grieving the loss of her son Archie.
Baby Archie was born on January 22 weighing 6lb 7oz but lived for just 13 hours and 42 minutes.
Sarah-Jayne, from Birchington, received an abnormality diagnosis last July, 12 weeks into her pregnancy. Archie, whose official due date had been February 3, had a left sided congenital diaphragmatic hernia and suffered a rare birth defect where the development of the corpus callosum, the band of white matter connecting the two hemispheres in the brain, was disrupted. This resulted in just a 30% chance of survival.
Sarah-Jayne says the medical care at both QEQM Hospital and the specialist Royal London Hospital that she was transferred to was “excellent” but mental health support to cope with the diagnosis was lacking.
The Royal Mail worker said: “My care at QEQM and from the local midwife has been incredible both before and after. They had a baby alert for me meaning I would be taken straight to assessment and transferred if needed. When I did go to triage I was seen within 10 minutes.
“The medical care at Royal London was also outstanding but when you get this diagnosis no-one tells you what charities to go to for help or where to get counselling. I was told Archie had a 30% chance of survival but was never asked if I was ok. There was also a lot of pushing to have a termination right up to the due date. I was continually asked even though I wanted it put in my notes not to be, and that was horrendous.”
Archie was a donor conceived baby through IVF. Sarah-Jayne took the decision to have that treatment after she was told she needed a hysterectomy due to suffering endometriosis – where tissue grows in the ovaries and fallopian tubes.
The 32-year-old said: “I couldn’t go ahead with it without trying for a baby first. It turned out I had a lot of eggs, so I donated eggs to a family that needed them too. We both amazingly fell pregnant first time and they are due any time now.
“I had been due an appointment to discuss the hysterectomy but cancelled it. It was too much to deal with.”
Now Sarah-Jayne has launched the appeal to provide funding for a specialist support service in Archie’s memory to help other parents.
She said: “I feel so broken losing my beautiful boy, each day hurts so much more, but I hope I can leave him something to be proud of.
“I am trying to give Archie a lasting legacy and help parents in this situation in future. I want to make sure his 13 hours and 42 minutes count.
“Over the last nine months I have spent many hours in that waiting room watching parents walk out with the same shell shocked look, and having no mental health support or person to point them in the right direction. I want Archie to have an impact on making a positive change in ensuring future parents have more than just medical support.”
Sarah-Jayne has an appointment on March 16 with the Barts Charity – which supports five specialist hospitals – to discuss how the service will be set up and what it will provide. She has gained approval for the legacy service to go ahead.
She said: “The charity will help me set up the legacy support network for the fetal medicine unit in Archie’s name.”
A service to celebrate Archie’s life is due to be held this Friday (February 21).
CDH UK is the Congenital Diaphragmatic Hernia Support charity. It consist of patients, families, friends and medical professionals affected by CDH and is run by a team of passionate expert patients and family members who are dedicated to supporting those affected and furthering research.