Dealing with a Failure to Thrive Diagnosis

Joanna's son during the sweat test for Cystic Fibrosis, notice the binky. We still haven't been able to break the addiction.

My son has always been small. He was born weighing 6 lb, 2 oz and was 20 inches long. In the back of my head, I attributed his small weight to the fact his umbilical cord was wrapped around his neck four times. After all, I was almost a 9 pounder as a newborn so I figured my child would be the same

He never “caught up” on weight and was always in the lower percentiles for weight, usually hovering around the 10th percentile but after he weaned from breastfeeding at 12 months old he dropped down to the 7th, then the 5th and eventually less than the 1st percentile where he currently resides.

My pediatrician is wonderful and not an alarmist by any means, but at his 15 month appointment I expressed concern for my son’s lack of appetite and growth. She referred me to  the local children’s hospital to meet with a Gastroenterologist to rule out any underlying health conditions.  The doctor we met with was wonderful and tested him for various diseases, such as Cystic Fibrosis and Celiac Disease. Fortunately, his blood work  for celiac and sweat test for cystic fibrosis all came back negative.

She then referred us to the “Feeding Team” to work on getting him to eat better. The Feeding Team was an amazing team comprised of over 6 doctors, therapists and residents. They observed my son eat a meal and talked with us for almost 2 hours. It was helpful for them to see his lack of interest in food and offer their suggestions on how to get him to gain weight. After our appointment with the Feeding Team we have kept up with regular appointments with the Occupational Therapist and she has helped him gain some upper body strength and learn how to chew his food better.

It’s been a journey over the past few months and I know we have made some progress, but that doesn’t make accepting a failure to thrive diagnosis any easier. It stings every time someone at the grocery store asks if he is 10 months old or whenever anyone comments on how tiny or small he is. My son is now 19 months old and only weighs 20.4 pounds and is 31 inches tall. He has hit every developmental milestone on time or early;  however,  he is a peanut. Being small doesn’t make him any less of an amazing toddler so it hurts me as a Mom when people make such a big deal about his size. To be perfectly honest, when he was first “FTT,” it felt like I was a failure as a Mom.

As a Mom (or Dad) have you had to deal with a tough diagnosis? How do you manage?

*You can follow our journey through the Failure to Thrive diagnosis here.


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