Newborn diagnosed with terminal illness after refusing to be held
Laura Sayin’s son Teo has been diagnosed with non-ketotic hyperglycinemia, and she has launched a fundraiser to help find a cure
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Your support makes all the difference.A mother whose “special” boy was diagnosed with a terminal illness at just seven days old, leaving him unable to walk, talk, sit up or smile, has said no one should ever have to “bury their child” as she fundraises for treatment which could extend her son’s life.
Laura Sayin, 39, a business development manager who lives in London, became pregnant during her honeymoon in Thailand, and said she had a normal pregnancy.
She had to be induced as her baby “was not budging”, but after four days in labour, her “incredible” son Teoman (Teo) was born at 41 weeks on September 27 2022.
Teo passed all his medical tests after birth, but on the third day in hospital Laura started noticing concerning symptoms including Teo railing against being held or fed.
He was immediately rushed to the neonatal intensive care unit (NICU) and placed on a ventilator, as he appeared to be struggling with his breathing.
On the seventh day, Laura then received the “heart-breaking” news that Teo had non-ketotic hyperglycinemia (NKH) – a rare, genetic, metabolic disorder – which is terminal.
His condition, which is a severe form of NKH, means he has global brain damage, regular seizures, significant developmental delays and will never be able to walk.
He cannot hold his head up or sit up on his own, has poor vision, does not smile or laugh, needs to be fed through a tube, and most likely will not be able to talk.
While Teo is now six months old, Laura is constantly “worrying about what time she has left with him” – and after learning about gene therapy, which could extend and improve Teo’s life, she has launched a fundraiser in the hope that she can access treatment in his lifetime.
“You don’t want to ever say goodbye to your child,” she said.
“You don’t want to bury your child; it’s just not something you should ever have to think of.
“But unfortunately, it’s something you’re constantly preparing for with a condition like this.”
She added: “You would do anything for your children.
“If somebody said, ‘Here is something that can save your child, or you can just let them slowly pass away’, what option are you going to take? And that’s how I see this fundraiser.
“I’m doing everything I can, it is literally to save my child’s life.”
Teo was born at Chelsea and Westminster Hospital in London.
He did not cry or want to feed or be held within the first 24 hours after birth, but Laura said she was reassured by the midwives that this was “quite normal”.
During the second day, Laura started to notice that Teo was not breathing normally, but on the third day, everything changed and “things went from bad to worse”.
Teo was rushed to the NICU and placed on a ventilator.
Laura said: “The head paediatrician came round and just said to us, ‘He’s really floppy, he’s a really floppy baby, we’re not happy with this at all. Can we take him down to NICU?’
“At this point, we were in a state realising there’s something very wrong with the baby.
“Before we knew it we were in NICU and he was in an incubator, wired to everything, and they couldn’t tell us what on earth was going on.”
To make matters worse, Laura had lost a significant amount of blood during the birth and ended up “passing out” and requiring a blood transfusion.
Then, on the seventh day in hospital, Laura and her husband Moss, 36, a self-employed animator and musician, were told Teo had NKH.
Laura said she felt “completely numb” and Moss started hyperventilating.
“They told us we would likely lose him when they turned off the ventilator, that he would probably just pass away, so we had a matter of hours or days with him,” she said.
“It took me a couple of days to build up the courage to turn off his ventilator.
“He continued to breathe … but I think doctors just assumed he might slowly pass away.”
Teo survived and, after three weeks in hospital, Laura and Moss decided to take him home, where he received palliative care.
Laura had not heard of NKH prior to Teo’s diagnosis, but she described it as a “horrible” condition – and at that time, the couple were told he had a life expectancy of six weeks.
“I was very fixated on life expectancy because I just wanted more than what they were telling me we could have,” she explained.
“I was just desperate for my baby not to pass away after just days and weeks.”
After speaking to some specialists at Great Ormond Street Hospital, Laura then discovered children with NKH can live to four or five years old.
She and Moss continued to care for Teo at home and he is now six months old, however, he is on approximately eight different medications and the couple have to “work in shifts” to look after him, meaning they cannot spend much time together.
“We’ve got oxygen in our house; we’ve got boxes of syringes,” Laura explained.
“Instead of cupboards full of baby food, I’ve got cupboards full of medicines.”
Since Teo has extremely low immunity as well, the couple cannot take him on outings or let him spend time with other babies.
While he loves music, cuddles and kisses, and he “coos”, Laura has been told he “won’t develop past a six-week-old baby” – and this can be particularly difficult to accept when she sees other families with babies who are hitting milestones far more quickly than Teo.
She said she cries every single day, feels anxious, and is “living off her adrenal glands constantly”.
“While I’m so proud of Teo for completely different milestones, it’s gut-wrenching, and you’re constantly worrying about what time you have left with them,” she said.
Laura and Moss have connected with other families who have children with NKH, which has been “amazing”, but there is currently no cure for the condition.
She said research is being undertaken into gene therapy for NKH – a technique that uses genes to treat, prevent, or cure a disease or medical disorder – but there is a lack of funding.
Learning about gene therapy has given Laura “hope”, as the treatment could extend Teo’s life, and so she has decided to set up a fundraising page with a target of £10,000.
She said she will go “above and beyond” to raise awareness and as many funds for as long as Teo lives, and afterwards, as she does not want other families to go through what they have.
She said she is “desperate” and will do anything to try to save her child’s life.
“I will never ever, ever, ever stop fundraising for gene therapy, not until it’s here – and that’s whether it’s in Teo’s lifetime or not,” she said.
“We’ve been so massively affected by it; I just won’t ever rest until people don’t have to go through this.”
She added: “I don’t ever want to say goodbye to my child, I don’t ever want to lose him for something that I know exists … it’s my hope.”
To find out more, visit the fundraiser here: www.gofundme.com/f/teos-journey-with-nkh-and-gene-therapy