For most parents, by seven months old their baby is slowly starting to gain some independence, beginning to roll over, giggle and interact with the world. But for Hannah Wright and her partner Christopher Wright this couldn't be further from their reality with their son Theodore, or "Teddy" and "Little Ted" as they call him.
Born 10 weeks early on June 15 2022 weighing just 3lb 11oz, Theodore and his mum had a traumatic start to life. After a gruelling 28-hour labour in which Hannah was haemorrhaging blood rapidly and was forced to have an emergency hysterectomy to save her life, baby Theodore was born lifeless and needed 20 minutes of resuscitation to bring him back to life.
And this was not the end of the family's ordeal. At just 16-days old a brain scan showed Theodore had developed severe Periventricular Leukomalacia or PVL for short, it is a form of severe brain damage. PVL occurs because brain tissue has been injured and has died from a lack of blood flow and oxygen to the brain tissue before, during, or after birth, which Hannah believed in Theodore’s case was due to her labour.
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Now, despite being seven months old, in many ways Theodore remains a newborn. He weighs just a tiny 7lb 8oz and has to be tube fed and in constantly in and out of hospital. So much so that he started 2023 with his fourth hospital trip in around 30 days.
Instead of gaining weight and getting stronger, Hannah says that doctors are struggling to work out why Theodore isn't developing as he should. Due to the severe brain trauma and the fact he is classed as "failure to thrive" his parents are "afraid that the worst outcome could happen."
Hannah says that while there were complications in her pregnancy, there were no signs that Theodore had any brain damage and believed this was caused by her prolonged labour. She said: "They [doctors] found out at 12-weeks that I had Placenta Accreta, and it just got worse and worse and it started growing into my bladder so my consultant said we would have to do a C-section at 35 weeks.
"I didn't make it to 35 weeks, I started haemorrhaging really bad at 30 weeks. I was rushed into hospital and they decided to wait 28 hours to take him out as they wanted to ‘observe’ which is where I think the brain damage and the starvation of oxygen could have happened."
While usually the first moments of a baby's life are precious and something to treasure, for Hannah and Chris who have six other children, these were cruelly taken away from them. Theodore was immediately given CPAP and Oxygen and taken to intensive care and Hannah was under general anaesthetic while doctors performed an emergency hysterectomy.
"I was contracting and I was haemorrhaging a lot of blood, they took me straight to the Grange then. They gave me gas and air in the ambulance. They were good as gold they got here within 15 minutes of me ringing. When I got to the hospital I was not expecting to hear 'we’ll get him out' I was expecting just to be monitored.
"But they decided to wait 28 hours to get him out while I was bleeding so he could have been in there with that lack of oxygen from the placenta breaking away. They wanted to keep observing me and said that they needed a bigger team because there was a chance of a hysterectomy because it [the Placenta Accreta] had gone into my bladder.
"The reason they had to give me a hysterectomy was because my placenta had literally torn my womb in half. There was no way of repairing it so to save my life they had to remove it. The choice of having no children was made without me, it was taken from me and my partner. The fact that decision was made for me is upsetting.
"I had an epidural to begin with and they had to put balloons up through my groin so that it could expand to put pressure so that it could stop some of the haemorrhaging but that didn’t work so that's when they they put me under and took him out and did the hysterectomy."
Hannah wasn't able to see Theodore for two days while she recovered in the ICU. Chriostopher was able to see him but wasn't allowed to hold him, he could only watch through an incubator screen. "It’s so unnatural, the first thing I’d want to do is hold my baby but because he was so poorly and unwell we couldn’t," said Hannah.
Theodore remained in hospital for nine weeks until Hannah would have been 39 weeks pregnant. "He was discharged feeding normally," said Hannah. "However when he got home that's when we noticed he wasn’t gaining weight, he would stare off into space as if he was daydreaming.
"We would give him a little rub and try and get his attention then he would snap back to reality. From doing so much research into PVL we knew that was an absent seizure and the start of epilepsy. He was taken into hospital and put on a different milk and then discharged 4 days later. He was still losing weight and so he kept going back.
"He is still losing weight, even on the tube feed he’s not keeping it down, he’s still having these absent seizures. He’s still losing weight and that kept happening. He has been in and out three times before this time."
Doctors have told Hannah and Christopher that it is unlikely Theodore will ever walk, talk, sit or be able to interact as ‘normal’ and that his PVL diagnosis is the most severe grade it could be. He is also likely to develop epilepsy. When they were first told the news Hannah said she was "in denial."
"I didn’t believe them, that’s not going to happen to my child, but now it is starting to sink in and I am scared for his future. I want him to have a happy life. I don’t want him to be sat in a wheelchair watching his siblings kicking a ball around and thinking ‘I wish I could do that’
"He’s not hitting milestones, he’s not smiling or laughing, he just sits and stares and that's if he’s not asleep. He has started doing rigid movements which we think is another type of seizure he is having. It’s absolutely devastating. He should be rolling over, he should be starting to wean but he can’t do that because he is theoretically a newborn he is still only 7lb 4oz," she said.
Despite being tube fed Hannah says Theodore is still still not gaining weight and is now "fighting for his life" and that the family are "fearing for the worst ''."It’s been two weeks [since he was readmitted to hospital] and he is still frantically losing weight, fighting for his life.
"I constantly am always feeling negative because we have never been told any positive news, it’s always just 'is he going to survive' or 'is my son going to be ok'. He’s classed as failure to thrive, if he continues I am so afraid that the worst outcome could happen. I’m just asking myself what isn’t being picked up, what is wrong. It’s not being able to know what that is, it’s being completely clueless. It’s so frustrating to see him in so much pain."
Theodore is being treated at The Grange hospital in Cwmbran where he was born. However, due to her traumatic labour at the hospital and being diagnosed with PTSD and Psychosis after the birth, Hannah feels unable to visit. "If I go there and have a massive panic attack then that’s not good for Theodore, I need to be mentally fit for when he comes home again when that eventually is."
"It’s also hard on the children missing their baby brother. We just trying to put on a brave face for them and when they go to bed that’s when we cry and let our emotions out because we don’t want them to feel that energy."
Hannah and Christopher have started a fundraising page to help finance the specialist equipment Theodore will eventually need when he is allowed home from hospital, this will also fund their travel expenses to and from the hospital every day as Christopher, who works for Gwent Police is off work.
"There’s a special seat he needs at the moment and we have had a look at purchasing one but it’s an excess of £600 for that alone, it’s also the expenses of going back and forth, its also for a specialist buggy," said Hannah.
"It’s paying for private physiotherapy sessions, we have been told that he will have quadruple cerebral -palsy and the sooner we start intervention the better the outcome and to get him seen as soon as possible we need to go private."
Writing on the fundraising page she said: "With the money that we manage to raise, it will be spent on additional help and care, including different therapies for Theodore, as well as towards the purchase of a hydrotherapy pool which will give him a more a brighter more comfortable life, as well as towards an adaptive seat that he will use for his physiotherapy sessions. Also for a specialised buggy. We unfortunately cannot get all the help he needs via the NHS as there is just no funding and so we are having to go private for the help he requires."
A spokesman for Aneurin Bevan University Health Board said: “We’re very sorry to hear about the traumatic experience of Ms Wright and baby Theodore, and we would like to send our best wishes to the family. We would urge Ms Wright to contact us directly if she has any concerns about the care she received with us.”
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