A Little Angel’s Fight From Hirschsprung’s Disease

About six months ago, we were blessed with an adorable little angel and welcomed Baby Caleb into our lives. He was delivered into this world from a wound on my tummy but with a heart so determined, like he knows he would be under a series of serious tests at a very young age.

As he was my second child, I got excited with having a new born baby again as I have associated their smell like morning dew, their sweet baby breaths like that of angels, their soft grunting sounds their only way to communicate that they love being loved and be adoringly watched 24/7.

But Baby Caleb only weighed 1.8kgs, did not cry when he got out, had breathing difficulty, and had meconium stain. It meant he would be away from me as he needs to be in NICU for several days, without being breast-fed, without my comforting touch for him to feel better. And I had to bear it just so to make sure that he would be alright. Three days after and under the careful watch of our pediatrician and nurses, I welcomed Baby Caleb into my loving – hand! He was so small, he could fit into my right hand! And as I was briefed of his latest conditions, all I could remember is that he is well and we can finally bring him home. I was ecstatic of my new baby – but noticed something terrible after two weeks of breastfeeding. I noticed that his abdomen is distended, and his bowel movement decreased from five times a day to once day. He cries all the time that keeps him awake all night.

We went back to his pediatrician and reported his condition and was first diagnosed as colic and prescribed medicines. However, as he adds days to his age and nothing to his weight, I also noticed that his abdominal distension is getting severe - skin is translucent with mad veins looking as if it would rapture, his intestines are bulging, and his tiny hand grasps my finger as if telling me that there's something wrong but couldn't tell where the pain is.

After a month of multiple check-ups and diagnostics tests, we finally knew what the culprit was. Caleb was diagnosed to have Hirschsprung’s Disease (lack or absence of ganglion cells of the colon or intestines) and was advised to have emergency laparotomy and colostomy because he is at risk of enterocolitis, an infection of the intestines and colon that could be fatal at his current state. At that very moment I felt that life is so cruel to me and my son, but I had to fight for my child alone.

On September 9, 2017, barely three months, Caleb had his first major operation. He had colostomy and a bag that helps him defecate and ease his abdominal pain. His pediatric surgeon describes the abdominal spasm so intense that it is even unbearable for adults. And for him to have a normal life, Caleb needs to undergo two more major operations.

We are currently preparing him for his second operation on February 2018 which would connect the functioning portion of the bowel to the anus. Whilst Caleb has a lot of courage to undergo this procedure, a single-mom’s pocket is turning to understanding hearts, seeking charitable assistance from anyone who can and will make a kind and generous contribution for Caleb’s battle against Hirschsprung’s Disease.