Theodore’s Fight Against PVL Brain Damage

Hello Everyone, my name is Hannah and I am fundraising for my premature baby boy Theodore or as we call him “Teddy” or “Little Ted”

Theodore was born 10 weeks early due to Placenta Accreta, which then led to a placental abruption and I had a severe haemorrhage, I was blue lighted to hospital and was told by the doctors that they needed to get him out ASAP. However that “ASAP” turned in to 28 hours, and he was born lifeless and needed resuscitation, which took 20 minutes to bring him back. Due to this, he was severely starved of oxygen and has 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 in Theodore’s case was due to not getting him out quickly enough. He also needed a large blood transfusion to save his life, he also had a very large brain bleed upon delivery, which was discovered via ultrasound at 4 days old.

With PVL, the area of damaged brain tissue which can’t be healed or cured and it affects the nerve cells that control motor movements. In Teddys case he has “Grade 4 PVL” which is the worst case scenario. We have spoken to many consultants who have warned us that Theodore may never sit, walk, talk, run or even be able to eat solid foods and that it’s more than likely he will end up in a vegetative state for life. He also has started to develop infantile seizures, as well as absent seizures and is required to take strong medication to help “mellow” these out seizures.

We have also been told that he will end up being diagnosed with Spastic Quadriplegic Cerebral Palsy when he gets to around 18 months. They haven’t give us any hope or positive outcomes at all towards Theodore’s future.

So I am setting up this funding page to help with extra care for Theodore, including - physiotherapy sessions, hydrotherapy sessions, care for when he is in and out of hospital due to not being able to work anymore. My partner has taking months off of work to help care for him while at I take care of Teddy’s siblings. He is currently 6 months old (4 months corrected) and unfortunately he is not doing too well at all at the moment, and he has currently been re admitted back to hospital, due to no weight gain and not being able to feed among other health concerns. How long he will stay there? Unfortunately, we do not know but we have been told it is more than likely a few months. He is being fed by an NG tube via a pump as he cannot tolerate bottles anymore, despite that he still has large vomits and can’t keep his milk down, and continues to rapidly lose more and more weight. He is only 7lb 4oz (the size of a little newborn) His siblings at home, miss him so much and they cry a lot asking after their tiny baby brother, and their father who is being amazing as he is staying permanently with Theodore in the hospital. When he finally is discharged he will continue to have the pump feeding tube at home to get his milk and medication into him.

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.

Thank you to all of you who reads my story of my darling son Theodore, and whether it’s only just a £1 that you can donate it will all help and all we can hope for is that he is happy and as comfortable as he possibly can be. Thank you

With lots of love, and warm hugs

Hannah