Failure to Thrive...What is it?
Failure to thrive is defined as decelerated or arrested physical growth (height and weight measurements fall below the fifth percentile, or a downward change in growth across two major growth percentiles)
What are the symptoms?
- Lack of appropriate weight gain
- Irritability
- Easily fatigued
- Excessive sleepiness
- Lack of age-appropriate social response (i.e., smile)
- Avoids eye contact
- Lack of molding to the mother's body
- Does not make vocal sounds
- Delayed motor development
And why does it matter?
For families of children with pediatric feeding disorders this is a BIG concern, your baby probably at some point will be labeled FTT or "Failure to Thrive".
Now this may not affect some as much as others because they had an early diagnosis or medical complexity that came to light in pregnancy, they were and are a little more prepared. Not just them, but also the medical professionals who your child sees regularly. There was a reason for your child to be "small, dainty, little, underdeveloped, anemic, tired, refuse food, struggle to drink, etc."
But what about the group of parents and their children who don't have the advance notice? The ones who move along relatively "normal or typical", but then overtime something pops up that you know isn't right?
It may start with weight plateauing, but you don't question it because maybe the baby was sick that month?
... and your baby was delayed physically already from birth and diagnosed with hypotonia and you have been to PT every week right, your other child had delays too so its possible its normal right?
It may progress to refusing solid foods when you first introduce them, but that could be them just getting used to the texture right? No need to be concerned you are breast/formula feeding them and they have been "fine" thus far...Right?
But then you start to question the doctor's relaxed stance on what you see at home, what you know in your mommy's heart is not "normal."
I know this may seem a little too specific, but this is our story...
The impact just the first part of that diagnosis had on my heart was impossible to describe, and no mom/dad/caregiver of a child wants to hear that they have "failed."
I know that 's not what it's supposed to mean, but I can tell you with absolute certainty that more often than not when a child is "FTT" the parents on some level feel responsible even when they know it's not anything they did wrong.
I strongly believe this name needs to change, sometimes the children don't have excessive sleepiness, they make sounds and smile, they are a happy baby and rarely cranky, and the 3-5th% on the growth curve is STILL ON THE CURVE! there has to be at least one kid who grows that way for there to be a 1-100% scale right?
Now I am not saying that a child labeled FTT is always a medically reasonable explanation. There are the cases where someone waters down formula because they can't afford to buy X amount, and they don't realize that impact that will have on the baby, or the parent who really is God forbid starving the baby on purpose, or not understanding hunger cues because of some mental health crisis of their own.
But there has to be a better way for medical professionals to respond to those who are doing the right things and still ending up in the FTT category.
The impact of a "Failure to Thrive"
Our journey was really 4 years in the making. Our 2nd child was born and nursed like a champ after her frenulum was clipped and gained by lbs, and her brother followed her to the letter even down to a Torticaulis diagnosis and needing Physical therapy 2 years later. The part we hoped would skip him was difficulty eating and drinking, his sister had eventually caught on but still struggled in some areas eating "age appropriate" foods
...at close to 3 she was finally able to eat apples and banana's on her own without them being mashed...for an example.
So when he started eating solids at 6 months his weight had just plateaued and he had been ill, but when he gagged on solids his primary doctor recommended waiting another month and then trying again...I knew immediately I was seeing a repeat of our past with our daughter and hoped I was wrong.
Pretty quickly we discovered greek yogurt was the only texture he didn't gag on and that ANY chunk would cause him to choke, liquids were only able to be given by breast or same result.
By 11 months his weight was the same as it had been since 6 months and we were seeing an ENT for a severe posterior tongue tie, this was the "hail mary pass" as he was, as his primary doctor described "classic Failure to Thrive" and my heart broke; but he knew by our history with our daughter and the steps we had taken to get to the ENT that he was safe with us so we weren't hospitalized.
After surgery we went for regular and frequent weight checks, our son gained length some, but his head size was barely moving and weight still stalled despite him eating a high fat and protein diet on top of still breastfeeding up to 9 times daily. He had also gained a whole clothing size and looked more plump to us and others who saw him before. I was certain things were changing for the better, and the previous FTT diagnosis was gone...boy was I in for the shock of a lifetime!
By October 14, 2015 our primary for our children had retired and we were set to see a new doctor. We had seen her before as needed when we needed a same day appointment in a pinch and she was fine. I came to that appointment so excited and full of hope to see him having gained weight. I ended up in tears at the weight scale, my son was still 15lbs 8oz! at 15 months old! I felt sick in every part of me and knew our world was about to change.
We were admitted to the hospital for what was supposed to be a 3-day calorie study and ended up in-patient for 13 days at our local hospital while they attempted every intervention they could dream up, and 6 days in a hospital 2 hours away for a G-tube placement(feeding tube)/Nissen fundoplication surgery.
It would have been fine if that was all FTT brought us...but she is ugly and is sometimes wielded by even uglier people who no matter how much you prove yourself they aren't satisfied unless someone is hurt in the process.
This is the part that needs reformed most...CPS involvement.
When you leave the hospital or NICU with a "healthy baby" and then come back before 2 years old with a child labeled FTT then CPS is called to investigate...and oh boy did they ever!
During our first 2 days inpatient I met the ONLY social worker at our local hospital, and I know this because multiple times I requested someone else but there was only one for the whole pediatric department. She came in and attempted to present a kind and helpful demeanor, but something about how she watched me and my son was off...the very next day she became verbally and emotionally abusive to me and without proof other than my word nothing was done. She told me "things weren't adding up..." and "I don't think your son is safe in your care...but I really am here to help you and I understand what you are going through."
I found out she didn't actually have children so how could she possibly understand what we were going through? And because of her obvious prejudice she called CPS and then manipulated and lied to my family the rest of the time we were there.
I became very scared, jumpy, anxious, having chest pressure. and nightmares. The nursing staff were instructed to tell me she was "watching" us when she didn't show up to our room again for 8 days, but would lurk around the peds floor reading my son's charts...I have never been so scared for the safety of my child than I was with her in charge of our case.
An already stressful situation made so much worse by a person who had no check and balances.
When we were sent to the other hospital for surgery the treatment was night and day, the people were truly nice and helpful. Even that social worker treated us with respect and didn't use her position to harm.
The impact of my son's diagnosis and local hospital stay still affects us a year later...
- Our oldest child has nightmares, anxiety, and is highly emotional when she knows she will be away from us.
- Our middle child has since been diagnosed with a frontal lobe delay and still coughs a bit when drinking and continues to need PT for her physical delays.
- My Husband who has PTSD and Bipolar was stable on meds before the hospital stay and CPS investigations, but pretty quickly after we got home needed his meds changed and continues to struggle with feeling like we are safe especially when people visit our home or we go out in public.
- Our youngest child still has his feeding tube and is now 27lbs , takes half his daily calories by mouth but those calories don't seem to add weight unless its his predigested formula via tube, he is still hypotonic and in PT, He now walks, He had learned skills for eating and drinking which are now regressing and we still don't have a complete diagnosis despite genetic testing.
- I am so much more distrustful of the state agencies because they kept "forgetting" about our open CPS case and it was open till 120 days later despite 3 formal complaints from me and them reassuring me they found no reason for the investigation in the first place, I still have nightmares, and hope more than anything to get answers for my children.
I hope that one day parents with children like my own who struggle for mysterious organic reasons will no longer be victimized by the "Failure to Thrive" diagnosis. It needs to change as the results that can happen make the already stressful situation potentially more antagonistic than necessary.
It's a time in our lives that I hope my children will forget, but I know personally I will never forget the impact "Failure to Thrive" had on our lives.
Nico, Age 2 in his new "My Belly Has Two Buttons" shirt from "Chasing Sadie" on etsy
