Help for Baby Raphy, Our Hirschsprung Disease Fighter

Our little one, baby Raphy was born on June 5, 2016 with a distended abdomen and a congenital defect, Hirschprung Disease, a rare condition affecting 1 in 5000 births wherein the large intestine is lacking in nerve cells or ganglion cells responsible for moving stool through the intestine and generally needs 3 surgeries to treat this condition.

Immediately after giving birth, we were referred to a Pediatric Surgeon who recommended an exploratory laparotomy procedure. He was only less than a day old. We were scared and anxious. That time he needed O+ blood, and since there was shortage of the blood type in our province, we decided to transfer him to another medical facility in Manila. It was distressing not being able to catch a glimpse of him, or hold him in my arms after giving birth to him.

The following days passed by in a flurry. Baby Raphy was hooked to an IV and an orogastric tube (OGT) to decompress his stomach. The doctors in Manila wanted to check first if the size of his abdomen will improve while using the OGT. Every now and then they would measure his abdomen. He was also expelling greenish fluid through his OGT, which the doctors monitored. There were days his condition seemed to improve (his abdomen reduced in size), and there were also days when his abdomen returned to its original state (distended). When he was just 3 weeks old, he had a loop ileostomy surgical procedure done on him to divert waste into an ostomy bag, since his large intestine cannot be utilized. He does not poop like normal babies do. His (acidic) waste drains into a bag which has caused his skin to be excoriated and irritated, which currently we are treating with zinc oxide cream and a diaper since an ileostomy bag won’t adhere to his skin.

It is a continuous recovery process for our little one. Baby Raphy had been in and out of the hospital due to gastroenteritis and intestinal adhesions. January of this year he was diagnosed with severe protein energy malnutrition and was treated in the hospital for a month. He was forced fed with breastmilk through a nasogastric tube (NGT). At nine months, his developmental pediatrician had advised rehabilitation to catch up on his motor skills since he has Global Developmental Delay. In the weeks and months that followed we were fortunate that his state of health improved. Last September 14, 2017 he had his second surgical procedure, endo-rectal pull through to remove part of his intestine without nerve cells.

Our little Raphy is on the road to recovery. We pray our baby’s health will continue to improve . His hospital confinement has drained our finances, that’s why we are seeking your help for his third and hopefully last surgery first quarter of 2018, when he will be a year and 8/9 months. He will have the section of his ileum or small intestine closed so his digestive process will be “complete.”

We are appealing to the kindness of your hearts to donate for Baby Raphy’s medical fund. Your generous donation will help him live a normal and healthy life like other kids do.

Should you have any inquiries or questions, you may reach us through email, [email protected], or at +63999-969-7415 or +63906-559-4304

Thank you.