WATCH: Hartlepool mum tells of final moments with baby Seb

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A heartbroken mum read the poignant words of a children’s story book ‘Guess How Much I Love You’ as her seven-day-old baby died from an extremely rare lung condition which has affected only 180 newborns in the world.

Hartlepool woman Sarah Marriott and her partner Jonathan Blenkinsop had to make the heartbreaking decision to switch off their beautiful baby boy Seb Patrick Blenkinsop’s life support machine after he became ill when he was born.

Sarah Marriott kissing her beautiful baby son Seb Blenkinsop.

Sarah Marriott kissing her beautiful baby son Seb Blenkinsop.

Tests after he died found he had the genetic condition Alveolar Capillary Dysplasia (ACD).

The condition cannot be discovered before birth and they are now hoping to help other families who have had to face the same heartache.

They are due to have DNA testing by a medical research doctor in the US to help find answers about the condition and are working with other affected families who are trying to fund such research into the killer condition.

Seb was born by emergency caesarian section, weighing 4lb 13oz, at the University Hospital of North Tees in Stockton.

We just kept telling him how much we loved him, kissing him, saying sorry for not being able to prevent it and that we wished it could have been different.

Sarah Marriott

But after expecting to be greeted with a healthy newborn, Sarah, 32, and her partner Jonathan, 31, were devastated to find there was something severely wrong with Seb’s tiny lungs.

He was placed onto a ventilator immediately, needing 100 per cent oxygen to keep him alive, and was transferred to the Freeman Hospital in Newcastle.

Frantic Sarah was finally able to go and be with her baby after needing to stay in recovery at North Tees for an agonising two days.

Doctors worked tirelessly to try to find out what was wrong with the tiny youngster but to no avail.

Sarah Marriott with a photograph of her late son Seb Blenkinsop.

Sarah Marriott with a photograph of her late son Seb Blenkinsop.

Seb had started to have fits and further examinations showed bleeding on the brain which caused severe brain damage.

The couple were told that nothing more could be done for their son and were advised to turn off the machine which was keeping him alive.

And after exactly seven days since he came into the world, Seb, who was born on April 2 at 11.07am, died on April 9, at 11.07am, in the arms of his mum, and with his dad by his side.

It was after his tragic death that tests revealed Seb had the rare condition Alveolar Capillary Dysplasia (ACD) - a genetic disorder involving abnormal development of the capillary system around the lungs which has only affected four babies previously in England and cannot be detected until after birth.

Seb Patrick Blenkinsop

Seb Patrick Blenkinsop

Sarah, who works in recruitment, said: “I read a book called Guess How Much I Love You to him as he died, about two hares. He had the little hare teddy with him to match the whole time.

“We just kept telling him how much we loved him, kissing him, saying sorry for not being able to prevent it and that we wished it could have been different.

“I knew it was the best thing for him, and it felt like a relief for him that he wasn’t going through anymore pain or machines pumping medicines into him.

“After he passed and the machines were disconnected, we bathed him and finally used some of his own clothing and dressed him for the first time.”

She added: “It’s still so emotional. Within 30 seconds of waking up I cry. I think about him all day. I sleep with his little hare teddy every night - it makes me feel closer to him.”

In hindsight Sarah says one complication of her pregnancy was that she was carrying excess fluid, which can mean nothing, or it can indicate that the mother has an infection, or it can suggest something is wrong with the baby.

Seb Patrick Blenkinsop

Seb Patrick Blenkinsop

But rigorous checks by medics did not pick up little Seb’s illness and Sarah was reassured that her baby was fine.

Sarah, who is also mum to two children from a previous relationship – Seb’s sister Sadie, 11, a pupil at Manor Community College, and brother Kori, 9, who attends Kingsley Primary School – said: “Seb just looked like a perfect newborn when he was born. It sounds cheesy and corny but I never thought anything like this would happen to me or my baby, it’s like something that you read in magazines.

“I felt just like a robot.

“It was so hard getting told what they were doing to him at the post mortem but we knew it was the right thing to do otherwise we would never know what was wrong and research can’t be done otherwise.

“But it felt like he had already been through so much.

“I wanted to blame somebody but after looking into this condition, there is nobody to blame. The only thing we can do it try to help get it researched so that one day it can help.

“I’m up and down every day. It still doesn’t feel like it’s happened.”

Raising vital funds in memory of Seb

Sarah and Jonathan, a plumber, have since been in touch with a doctor in the US who is researching the condition, and are due to have DNA testing done on themselves to help in the fight for answers.

They have also contacted other affected families who are trying to fund such research including The David Ashwell Foundation, run by a family in Middlesbrough whose baby died from the same condition, which as raised £1400,000 since March 2011, funding two medical studies already, and a further three studies in 2015.

Sarah now wants to do her bit to help the charity and has organised an event on October 23 in Seb’s memory, at the Bellevue Social Club, in Kendal Road, for which she is looking for local businesses to help with donations of prizes and gifts to raffle on the evening.

To donate or for further information visit http://uk.virginmoneygiving.com/SomeoneSpecial/Sebblenkinsop, http://www.facebook.com/Seb.blenkinsop, or www.acd-association.com

Seb Patrick Blenkinsop

Seb Patrick Blenkinsop

Sarah Marriott.

Sarah Marriott.

Seb Blenkinsop in the Freeman Hospital at four days old with his Dad Jonathan.

Seb Blenkinsop in the Freeman Hospital at four days old with his Dad Jonathan.