My little soldier

I have been thinking long and hard about starting this blog for around two years now, and after gaining the confidence from creating an Instagram account and the support from our lovely followers, I felt it was time to take the plunge.

On February 12th 2016 at 10:40am my now husband and I welcomed our son Jake into the world, a health 7lb 2.5oz. Having been born with Hirschsprungs Disease, a rare genetic disorder of the intestines, I was anxious to know if I had passed down the disease to my first born son. Fast forward 12 hours, and Jake had been blue lighted to the nearest specialist hospital in a ventilator, as it was apparent from stomach distension and failiure to pass meconieum that he was showing the early signs of the disease. 6 weeks of bowel wash outs and a biopsy confirmed that indeed the disease had been genetically passed down, and the affects were more devastation for our son than myself as the next few years would reveal.

******************************

Hirschsprung’s disease is a rare disorder of the bowel, most commonly the large bowel (colon), which can lead to severe constipation and intestinal obstruction. Hirschsprung’s disease affects one in every 5,000 babies.

Normally, the muscles in the bowel squeeze rhythmically to push faeces (poo) through to the rectum. In Hirschsprung’s disease, the nerves that control these muscles (ganglion cells) are missing from part of the bowel. This means that faeces cannot be pushed through the bowel in the usual way.

The length of the affected part of bowel varies from child to child. Most commonly the rectum and/or sigmoid colon (the last parts of the large bowel) are affected. The entire colon is affected only very rarely.

Source: https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/hirschsprungs-disease

*******************************

Both myself and Jake sit in the very rare category where all of the large colon was affected and part of the small. Surgical intervention was needed to redirect the normal functioning bowel to the stomach wall forming a stoma, to be able to remove the affected bowel. The stoma is used for toileting with a bag system in place, catered to the individual in terms of size and stool output. Only time can determine if a pull through operation is an option. This type of surgery is where the stoma is removed and the functioning bowel can be connected to the rectum. For myself this was done successfully, however for Jake it was not meant to be. 2 1/2 years later, a Coeliac Disease diagnosis, gastrostomy surgery, a diet consisting of feeds via a portable pump, and multiple long stays in hospital, we are where we are today. Despite everything that life has thrown at him, as he stands today he is the healthiest he has ever been. It is always said how happy, chatty and active he is and he makes me so proud I could burst. I hope with the documenting of our journey that we can spread awareness, and show how with his dedicated Dad and step brother, we are a family that live our lives to the full with a very brave little boy at the heart of it.

Thank you for reading. Rachel and Jake x

*********************************

Difficult times always create opportunities for you to experience more love in your life. Woody Allen

*********************************

F32A9922-6A47-4FD5-9018-C913E5B86693

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s