'My Son Did His First Poo At 7 Months Old. Here's Everything You Need To Know About Hirschsprung Disease.'

"If you’re still trying to get your head around this headline, you’re not alone. Upon speaking to Alejandro’s mum, Madeleine, I too was in shock over what she was telling me.

Alejandro did his first poo in his nappy when he was seven months old. Madeleine and her husband Enzo never experienced the things that most parents live through day in day out for the first year of their baby’s life. Things like nappy rash, and poo explosions were completely foreign to them, until Alejandro reached the ripe old age of seven months old, and this family started enduring less frequent hospital trips, and a slightly more normal home life with a new baby.

Here, she tells us of her family’s experience with Hirschprung Disease."

What is Alejandro's condition called and how rare is it?

"Alejandro's condition is called Hirschprung Disease. The disease affects 1 in 5000 babies. It is rare for people to know about it or what exactly it is as it is something that is usually presented at birth and rarely when the child is a bit older."

"A condition of the large intestine (colon) that causes difficulty passing stool. Hirschsprung disease involves missing nerve cells in the muscles of part or all of the large intestine (colon). Present at birth, it causes difficulty passing stool."

When did you become aware of Alejandro's condition and what was that like?

"We became aware of Alejandro's condition within 24 hours of birth as he did not pass his first bowel movement, he also had a distended stomach and was not feeding properly. Within 48 hours he was vomiting bile, which is quite serious in newborns. 

We were left feeling incredibly helpless as he was a newborn and couldn't tell us what was wrong. Thankfully one of the nurses and a registrar in the NICU (Neonatal Intensive Care Unit) said he needed urgent attention and had him looked at very closely then transported to the Sydney Children's Hospital in Randwick."

Talk me through the first few months of Alejandro's life and how hard that was for all three of you?

"The first few months were challenging as Alejandro needed an urgent surgery to have a stoma inserted in his bowel, as he couldn't pass any stool on his own.

He had a stoma for a few months which was hard as it wasn't like changing a nappy it required more care and attention. 

We had many sleepless nights and trips to the emergency department, thankfully we had - and still have - an incredible team at Sydney Children's Hospital."

Do you have a particular memory of a really tough time with his condition?

"There have been a few really tough moments especially when he was a newborn. 

Having just had Alejandro and having him rushed to a different hospital was incredibly hard as I did not have that recovery time, skin-to-skin, or the time to give him his first bath - or to do anything with just him and I. 

Alejandro having his very first surgery at only a few days old was absolutely heartbreaking but also life saving, so we are always grateful for that surgery. 

His second surgery which went for seven long hours was incredibly hard. What is known as a pull through surgery was performed, and required the surgeons to assess his bowel and remove any of the dead tissue, before reconnecting that with the healthy tissue."

"Having his stoma reversed was an incredible moment but also a really tough moment. This now meant he would do his first poo in a nappy at seven months old! 

Prior to this, we never had the experience of nappy rash, nappy explosions and so forth so it was new to us - as crazy as that may sound. 

It did also come with complications, which for Alejandro meant he faced multiple experiences with another condition called 'Entrecolitis’. This tends to happen after a child with Hirschprung Disease has their pull-through surgery and an infection can take place. It requires antibiotics, and daily if not multiple-times-a-day bowel washouts. It also needs to be treated as quickly as possible as it can be life threatening."

What advice would you give to other parents who could be going through something similar?

"Listen to your doctors and also your intuition! If you're unsure about anything, no matter how big or small, always ask your team.

Having a great support group and people you know you can talk to is really important, whether it be family or friends - or even like minded strangers!

Finding a group on Facebook or any other platform is really helpful, for us we have two groups that we are following and are apart of, one of the is "Help for Hirschprung Disease" and the other is "BGK - bowel group for kids" both of which are great groups as they have really helpful tips and posts from other families."

We would like to thank Alejandro's mum, Madeleine, for sharing their family's story. If your family is experiencing difficulties, or you suspect there could be something wrong with your child, contact your doctor immediately, or in the case of an emergency, contact 000.