Thijs is 2.

He’s inquisitive, into everything, outgoing, determined, endearing and finally learning some words.

The best part? He’s healthy.

I haven’t posted about Hirschsprungs in a long time, largely because he began to thrive and we were mercifully able to allow it to sink into the background of living.

We have experienced another bout with enterocolitis in December 2015 (when he was 13 months old) and this time we ended up admitted to Penn State Hershey Children’s Hospital. We were there 3 days, total. We get incredible treatment there and he overcame the infection after some consistent IV antibiotics and routine irrigations.


We were informed that the likelihood of infection decreases measurably after age 2, and though we keep a faithful eye, we have found that he does indeed seem to be less susceptible. Before age 2, with any fever or sickness, we found he seemed to tend toward a slower colon. The hospital gave us a standing prescription for Flagyl (because we live at a distance), which we only used once. On that occasion, we saw warning signs that another infection was developing (the odor of his stool triggered a sensory warning in my instincts, he was lethargic, less appetite). On their own these symptoms can be circumstantial, but together and in a Hirschsprungs baby, they are cause for alertness. After a day or two of oral antibiotics, we found those signals to have subsided (though we completed the prescribed course). But this winter, he seems to be stronger, in general.

Really, Hirschsprungs is sort of old news for our family, but that might be beautifully therapeutic to hear if you’re just beginning on journey of your diagnosis and treatment. And while every story and case is different, let me offer this: allow yourself to stay at peace. Allow yourself hope and vision that extends beyond the sick baby. Keep everything in proportion and carry it gently, with calm. Teach your soul to be still.

Here is a hand to hold from across the valley you have to walk through: there is healing. It is abundant and thorough for your child, and for your heart as you carry your child and family. It’s in you, and you can do this well. Just one day–one hour–one moment–at a time. Worry will lend you nothing but emptiness.

Tyce will potty train soon. He’s slowly starting to signal interest. On that day, I will be taking a me-day. I will take myself to lunch, get a manicure, take a nap and do a selfie-dance through the diaper aisle. It will be a day worth celebrating, and I promise to come back and post again, as another beacon in the night that your Hirschsprungs baby can too.

3 thoughts on “Thijs is 2.”

  1. My son Paidashe had hirshsprung disease . I took care of him through it all by God’s grace. Now he has a two year old daughter Akudzwe who has hirshsprung too. Diagnosis was delayed and had colostomy after six months. She had pull through done at one year old. Am battling on with her too. This article helped me realize that she has enterecolitis. Am going to take her to the doctor. My son passed on last year in a car accident. I have to take care of my grandchild Akudzwe. Her mum goes to work at a local school. Its not easy, but God is seeing us through. One day at a time

  2. I am literally in tears finding your story. My baby is 8 weeks old and I have been reading online and searching for validation that what my baby is experiencing is real. He has not been diagnosed yet but I am so sure he has Hirschsprungs. There is someone else that had these exact symptoms. God bless you and your family. Thank you for sharing. Your inspiration is so needed right now.

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