Story
Our beautiful baby boy Moses was born on 16th July 2018, but on the 17th July he was rushed to our local Coventry Hospital. He was not feeding & was vomiting bright green fluid. We were told he was really poorly with a possible bowel obstruction & that we would need to be admitted to Birmingham Children’s hospital to be seen by specialist doctors.
The staff were amazing on Neonatal & Moses was soon diagnosed with a rare bowel condition called Hirschsprung Disease which meant part of his bowel did not work and he was unable to pass stool by himself. We were treated in Neonatal for around 9 days & were taught how to perform rectal washouts on Moses to keep him safe and empty his bowels twice daily.
A pull through operation would be arranged for Moses when he was 5 months old. We were discharged & the after care was amazing; we were assigned our wonderful Stoma Nurse who we were in regular contact with and she was there to support us whenever we needed.
After just 5 days at home, Moses became really poorly again. Doctors at our local hospital told us Moses would need a lumbar puncture & this confirmed he had contracted Ecoli Bacterial Meningitis ; our world just came shattering down again. We were admitted back to our local hospital this time where he was treated for 10 days, followed by 2 weeks home leave for intravenous daily antibiotics; He was so brave throughout this whole experience .
He was doing amazing after we came home and apart from the daily wash outs he was the happiest little baby.
On 23rd November 2018, Moses went back to Birmingham for his pull through operation; our surgeon was just one of the best. He explained everything to us and after 5 days in hospital Moses was discharged and was able to poop by himself . We were elated and everything was just perfect. We moved to a new house & couldn’t be happier.
On the 20th March 2019 Moses started to get unwell, showing signs of an infection. We took him to our out of hours and they told us he had tonsillitis. I was relieved it wasn’t the meningitis back again, however he just wasn’t getting better and after many trips back and forth to hospitals, on Saturday 24th March 2019 he was eventually admitted with dehydration...however something still wasn’t right. Moses became really unwell and unresponsive, and needed an IO resuscitation to stabilise him.
As parents seeing your baby deteriorate so quickly was beyond scary.
On Sunday 25th March a team of doctors from KIDSNTS, were called to Moses bedside, they gave us the most devastating news any parent could hear.... we could lose our baby and that Moses could die. He was a very poorly little boy, He was ventilated on the ward and transferred to Birmingham PICU.
He had contracted Hirschsprung Enterocolitis which is a fatal bowel infection, this then spread to sepsis .
Moses was so poorly and his life hung in the balance.
After 3 weeks in hospital, 2 blood transfusions, 2 operations , tube feeding & a life saving ileostomy (stoma) had been being created, which meant his severely infected bowel would have time to rest;
In December 2019 Moses stoma became narrowed which meant there was blockages causing Moses to become very Sick, he could not eat anything and was vomiting on a daily basis, we were sent back to BCH for more tests this time a Contrast study would be done to check which part of the bowel was blocked, we had the procedure and surgery was booked for the following week on Moses stoma to help with the blockage, we were discharged, when all of sudden Moses deteriorated rapidly became lethargic and had a rash that was not disappearing, he had sadly become SEPTIC, we were kept in ward 9 @ BCH for another 10 days before being discharged a few days before Christmas.
I want to raise awareness for the dangers relating to Hirschsprung Disease in every day infections that can lead to this horrific Enterocolitis and to say a huge thank you to the most wonderful team of doctors & nurses, who always go above and beyond to support, treat and help not only Moses but myself , husband and the rest of our beautiful family . We will be forever grateful .
All the money raised will be split between KIDS NTS & Ward 9 at Birmingham Children’s Hospital.
The staff were amazing on Neonatal & Moses was soon diagnosed with a rare bowel condition called Hirschsprung Disease which meant part of his bowel did not work and he was unable to pass stool by himself. We were treated in Neonatal for around 9 days & were taught how to perform rectal washouts on Moses to keep him safe and empty his bowels twice daily.
A pull through operation would be arranged for Moses when he was 5 months old. We were discharged & the after care was amazing; we were assigned our wonderful Stoma Nurse who we were in regular contact with and she was there to support us whenever we needed.
After just 5 days at home, Moses became really poorly again. Doctors at our local hospital told us Moses would need a lumbar puncture & this confirmed he had contracted Ecoli Bacterial Meningitis ; our world just came shattering down again. We were admitted back to our local hospital this time where he was treated for 10 days, followed by 2 weeks home leave for intravenous daily antibiotics; He was so brave throughout this whole experience .
He was doing amazing after we came home and apart from the daily wash outs he was the happiest little baby.
On 23rd November 2018, Moses went back to Birmingham for his pull through operation; our surgeon was just one of the best. He explained everything to us and after 5 days in hospital Moses was discharged and was able to poop by himself . We were elated and everything was just perfect. We moved to a new house & couldn’t be happier.
On the 20th March 2019 Moses started to get unwell, showing signs of an infection. We took him to our out of hours and they told us he had tonsillitis. I was relieved it wasn’t the meningitis back again, however he just wasn’t getting better and after many trips back and forth to hospitals, on Saturday 24th March 2019 he was eventually admitted with dehydration...however something still wasn’t right. Moses became really unwell and unresponsive, and needed an IO resuscitation to stabilise him.
As parents seeing your baby deteriorate so quickly was beyond scary.
On Sunday 25th March a team of doctors from KIDSNTS, were called to Moses bedside, they gave us the most devastating news any parent could hear.... we could lose our baby and that Moses could die. He was a very poorly little boy, He was ventilated on the ward and transferred to Birmingham PICU.
He had contracted Hirschsprung Enterocolitis which is a fatal bowel infection, this then spread to sepsis .
Moses was so poorly and his life hung in the balance.
After 3 weeks in hospital, 2 blood transfusions, 2 operations , tube feeding & a life saving ileostomy (stoma) had been being created, which meant his severely infected bowel would have time to rest;
In December 2019 Moses stoma became narrowed which meant there was blockages causing Moses to become very Sick, he could not eat anything and was vomiting on a daily basis, we were sent back to BCH for more tests this time a Contrast study would be done to check which part of the bowel was blocked, we had the procedure and surgery was booked for the following week on Moses stoma to help with the blockage, we were discharged, when all of sudden Moses deteriorated rapidly became lethargic and had a rash that was not disappearing, he had sadly become SEPTIC, we were kept in ward 9 @ BCH for another 10 days before being discharged a few days before Christmas.
I want to raise awareness for the dangers relating to Hirschsprung Disease in every day infections that can lead to this horrific Enterocolitis and to say a huge thank you to the most wonderful team of doctors & nurses, who always go above and beyond to support, treat and help not only Moses but myself , husband and the rest of our beautiful family . We will be forever grateful .
All the money raised will be split between KIDS NTS & Ward 9 at Birmingham Children’s Hospital.