Action supporter Lisle Ryder, a retired Hospital Chaplain, shares his memories of the arrival of his treasured grandson Ted who, after a traumatic birth and subsequent serious health problems, spent his first three months in hospital. Happily, Ted is doing well and has just celebrated his first birthday...
Ted was born at full term, with a good weight, to our son and daughter-in-law, Phil and Lorraine, on 3 September 2014. Unfortunately, sudden blood loss due to complications led to Ted suffering from HIE (hypoxic-ischemic encephalopathy) so he was rushed from Hinchingbrooke Hospital to Neonatal Intensive Care at the Rosie Hospital on the Addenbrooke’s site in Cambridge, with Lorraine following the next day.
Ted was cooled for 72 hours, a therapy developed with a significant contribution from Action Medical Research. Once the warming-up process began, he started to have seizures. Anticonvulsants were administered and he was put on a ventilator.
Once off the anticonvulsant, it took ages for Ted to awake which was very concerning as we wondered what damage had been done to his brain.
While on the ventilator he received nutrition through a 'long line'. He became very yellow and on day 20 his tummy began to ‘balloon’. There was concern for his liver and tests were conducted.
With his kidneys failing and suspected severe liver damage, surgery took place on day 22. The news came back that Ted had a perforated bowel. Seven centimetres of infected gut were removed and he was provided with an ileostomy bag to collect waste.
Two days after surgery Ted was able to come off the ventilator. It was now so much easier for Phil and Lorraine to hold him. A week later they gave him expressed breast milk via a nasal gastric tube. On day 36 he was finally able to take milk orally. He had been on a long line for five weeks.
It was not until the end of October that he was clear of antibiotics and anticonvulsant medication. With the trauma he'd been through, together with prolonged strong medical intervention, we wondered what disabilities or food intolerances he might have to live with.
However progress was steady and feeding went well as he recovered his swallowing reflexes (with assistance from the speech and language therapist). Ted soon became alert to sounds, following movements with his eyes and moving his limbs normally. A couple of weeks later Phil and Lorraine, with big brother Rex, were able to take Ted home.
At the end of November it was back to the Rosie Hospital for Ted to have the ileostomy reversed. Thankfully his bowel started to work and on 3 December at exactly three months old, Ted came home again.
Progress continued steadily and we were rewarded with smiles. At nine months came the final signing off by the paediatric team who were truly amazed that Ted was unscathed by the trauma he has been through and could take a wide variety of foods.
There was quite a party at his Baptism and an opportunity to give thanks for all the skill and care Ted had received and also for the strong community support at MOD Wyton for all the family.
It is a little miracle that Ted is doing so well and we are so grateful for the research funded by Action Medical Research. We have just celebrated his first birthday.
If you'd like to know more about the research we fund to help sick and vulnerable babies, please take a look here; you can also find out how cooling therapy for newborn babies was successfully developed. You might also like to read other real family stories: Emily, Samuel and Aiden are, thankfully, all doing well despite a traumatic start in life.