If former Preston North End footballer Chris Humphrey and his wife Kerry had one wish, it would be to have had more time with their first-born son, Jayden.
Little Jayden was born sleeping on September 11 2009, after developing Edward’s Syndrome.
Kerry, of Longridge, admits she can’t even remember saying ‘I love you’ to her boy as everything seemed so quick before she had to hand him to the midwife.
And now 10 years on, she wants to raise funds for resources to help other grieving parents through Royal Preston Hospital’s Baby Beat Appeal.
The 30-year-old is organising a 10-mile walk from Shireburn Arms, in Hurst Green, to The Plough, in Grimsargh, on September 15.
With three beautiful children, Amelea, eight, Cody, seven, and one-year-old Caleb, Kerry admits her journey as a mother has been a tough one.
After suffering three miscarriages by the age of 21, Kerry was delighted to reach 20 weeks with Jayden.
But her joy was short-lived as doctors warned the baby boy she was carrying may have Edward’s Syndrome and advised her to have a termination.
She explains: “I had suffered three miscarriages beforehand, so to get to this stage was phenomenal. I went for a 20-week scan at Walsall Manor Hospital in August 2009. Chris had signed at Motherwell in Scotland and was commuting whilst I was living in Walsall.
“I was taken into a room and told they needed to do further investigations because he was not moving much and only one kidney was functioning.
“I went to Birmingham Women’s Hospital for multiple screenings and scans. It was the most frightening time, as there was no communication. I was eventually told my baby would not survive and it was best to terminate, as they thought he had Edward’s Syndrome. Jayden had a diaphragmatic hernia which would be okay if everything else was fine, but his stomach had moved to where his heart should be and pushed the heart to the right. All four chambers of his heart were linked wrongly.
“I could not breathe and I broke down.
“We had all these medical people who didn’t know us, telling us we needed to end our pregnancy, but we weren’t going to do that until we knew more.
“I had an amniocentesis test to check if my baby had a genetic or chromosomal condition, which took longer than it should have done after a nurse tripped over a wire with the needle inside me, so we had to do it again.
“Results confirmed he had Edward’s Syndrome. I was told that if I got to 24 weeks and chose to end the pregnancy, doctors would need to put a needle through my stomach to stop his heart. I was told this in the middle of the ward with other pregnant women around. I was so upset I stormed out, I didn’t know how to deal with all of this.
“I was not eating or sleeping and didn’t know what decision to make.
“I had been told to end my pregnancy, but he was everything we had wanted.
“In the end, Jayden made the decision for us as he had stopped moving. I had 17 hours induced labour at Walsall Manor Hospital and Jayden was born sleeping at 23 weeks, weighing 628g. He was the most beautiful little boy.
“We had one hour with Jayden. I needed to get cleaned up and the midwife told me to hand him to her and she will hand him back. I didn’t even remember telling him I loved him. I couldn’t get him back again to then have to hand him over.
“One thing I wished I had was time. Jayden was handed over very quickly so I want to raise funds to help parents spend more time with their babies and create special memories and keepsakes.”
After some testing, it was revealed Chris, who played for PNE from 2013 to 2016 and now manages Gretna, has a reciprocal translocation. This is a chromosome abnormality caused by exchange of parts between non-homologous chromosomes.
She adds: “From this diagnosis, it meant that Jayden had Mosaic Syndrome due to the chromosome abnormalities passed on. Chris was giving me too much of chromosome 5 and 18 which resulted in Jayden having so many complications that couldn’t be corrected.”
Around three months after losing Jayden, Kerry fell pregnant again. A 15-week scan revealed Amelea was healthy and did not have Edward’s Syndrome.
However, tests once she was born revealed she too has the reciprocal translocation, meaning any children she had could be affected.
Kerry adds: “Unfortunately Amelea will have the same problems as me. But there is funding available for screenings. She will be able to have children, using IVF through PGS (Preimplantation Genetic Diagnosis), where they will take Amelea’s chromosomes from her eggs and take out the bad, and implant the good ones once they have mixed both the sperm and good eggs together.
“At the moment, this is only available in London and Nottingham, but further down the line, hopefully more progress will be made.”
Kerry went on to have another child in April 2012, Cody, and describes the agony of and waiting three weeks for the amniocentesis results.
She says: “I remember getting the results on the phone. Chris, Amelea and I had gone to Pizza Hut in East Kilbride Shopping Centre
“The call revealed we were having a healthy little boy. Chris was ecstatic and he ran up the escalators and shouted to the crowds of shoppers ‘it’s a boy.’ As Edward’s Syndrome is more common in boys, we never thought we would have a boy. We knew we didn’t need to worry about him as he had the same genes as me.”
Kerry, who is a support worker for adults with learning difficulties, again fell pregnant in 2017 - five months after suffering an ectopic pregnancy.
She says: “It was very traumatic as I lost one of my tubes. We were living in Preston, but Chris was working in Edinburgh as he played for Hibernian FC at the time on loan. As a family we all stayed up in Edinburgh for two weeks until I had recovered.
“I fell pregnant with Caleb five months later and I went into severe panic. It was very stressful.
“I had a natural birth and he was born on June 3 at Royal Preston Hospital. He needed to spend a bit of time in neonatal as he developed sepsis, but the staff were great and he pulled through.
“I had gone from so much heartache to having my third healthy child and this was my happy ending.”
Kerry, Chris, Amelea, Cody and Caleb are now planning the 10-mile walk which takes in the beautiful countryside in Hurst Green and Grimsargh, in September to raise funds for Baby Beat.
There is also a five-mile option from the half-way point of Ribchester Arms.
So far, more than 30 people are joining them, including family members and staff and parents from Amelea and Cody’s school - Grimsargh St Michaels.
Kerry adds; “Jayden was born in September and everything significant seems to happen around that date. Amelea was born in September and we found out I was pregnant with Cody and Caleb in September. We feel he is very close to us and it brings us comfort.
“I have a tattoo of Jayden’s footprints on my feet, so he walks with me.”
To make a donation, visit www.justgiving.com/Kerry-Humphrey1.
If anyone wishes to join the walk, email firstname.lastname@example.org.
Kerry adds: “There is still a taboo about stillbirths and miscarriages and I want to break that. You feel so alone at the time, but I want people to know there is support there and they can join us on our walk.”