Throughout this journey with Failure to Thrive, I have been asked a lot of questions about the diagnosis. It is somewhat vague. It actually more or less indicates something else going on. We have spent the last year and a half searching for what causes Beckett to struggle with growth as well as trying very hard to keep him growing. A label like “failure to thrive” does hurt. I mean, it has the term “failure” right there in it. No one wants their child to be called a failure to anything. And to fail at thriving??
Uggg. I am not a doctor or nurse, but I thought I would take a minute to share a few notes about what I have learned over the last year regarding
FTT.
This is primarily just an informative post. Disclaimer: I am a parent who has done a lot of reading on the subject. I am in no way licensed as any kind of expert in the area of failure to thrive. This is all just from a concerned mom’s point of view. Please see your doctor if you have real questions concerning failure to thrive.
1. Who is considered failure to thrive?There are typical standards of growth, as well as growth patterns and curves.
When a child doesn’t follow a curve or these patterns, they may be diagnosed with FTT.
Percentiles are used to show how your child basically measures up against same age peers. A child in the 30
th percentile is bigger than 30% of same age peers and smaller than 70% of same age peers.
When a child drops below the 3rd percentile for weight or height OR drops several percentiles, they are typically considered a failure to thrive. Below the 3rd is the
FTT range. A child who starts out in the 10
th percentile and continues on in the 10
th percentile is following a growth curve. They would not be termed failure to thrive. A child who is in the 75
th percentile at 18 months and drops to the 30
th percentile at 2 years would raise a red flag. A baby who is in the 50
th at 9 months and drops to the 20
th at 12 months would raise a red flag. Children should always follow their personal growth curve. There will be some variances and leveling out over time, but a large drop on the curve or a plateau would be reason for concern. The label "failure to thrive" seems to vary some from doctor to doctor. Some seem to diagnose it quicker than others, others like to use another term such as "lack of weight gain." I find it important to have a doctor who values good growth and pays close attention to your child's growth curve regardless of what labels they decide to use or not use.
Beckett was not in the 3rd percentile when he was first diagnosed. But he had dropped from the 75
th percentile to the 25
th percentile. He had also not regained to his birth weight in the typical amount of time. This was enough of a concern to diagnose him as failure to thrive at one month old.
In general, babies are expected to double their birthweight around 4 to 6 months (some say 4, some say 6) and triple their birthweight at one year. Now, Brant did double by 6 months, although he did not triple at a year. He was in that "leveling out" category. Beckett was just double his birthweight when we placed his feeding tube last month. (I think their are different standards/expectations of preemies...?) To put it in perspective, our boys weighed 3 oz different at birth. (Brant was bigger.) When Beckett was 16 months, he weighed what Brant weighed at 5 months. Now, at almost 18 months, Beckett weighs less than Brant at 6 months.
A percentile alone is not an indicator of how healthy a child is. The growth curve or pattern over time must be observed.
2. What is failure to thrive?
Here is a link to a great website regarding
FTT:
http://kidshealth.org/parent/medical/endocrine/failure_thrive.htmlYou can gain a lot of useful information by checking out that site. Failure to thrive is not a very clear diagnosis, as it is more of an indicator of another condition or problem.
Most common, the lack of growth is due to not consuming enough calories. A child may not eat enough calories if there is an underlying medical condition causing pain when eating, such as reflux or
gastroparesis. A child also may not eat enough if he has a sensory processing disorder that leads to a food aversion. The child may not like the way certain textures feel in his mouth and will refuse to eat them. (Not all kids with a sensory processing disorder are
FTT.) Finally, a child may not eat enough calories simply because they are not fed enough calories. Unfortunately, parental neglect or simply lack of knowledge is a common cause of
FTT. When Beckett was hospitalized the first time, we were actually asked if he ever drank Coke or Dr. Pepper in his bottles. Sad to know that some babies are not fed formula or breast milk, but whatever is laying around the house. Some parents are not educated to know that the child needs a nutritive drink made for babies (breast milk or formula). Try not to complain when you get too many
flyers in the mail from
Similac and
Enfamil...just know they are getting the word out to parents everywhere on baby nutrition. And then there are the parents who sadly just neglect their babies completely. This is terribly heartbreaking.
Lack of growth can also be due to another disorder, disease, or syndrome. When a child eats enough to grow, but does not grow, there is a problem. Beckett most closely falls into this range. Despite his
gastroparesis, he does take in enough calories to grow, but it takes a mega amount of calories for him to grow. We have always worked very hard to concentrate his calories, so that even if he
isn’t eating as much as typical, he will still get enough calories. For us, it seems to be more of a piece to the puzzle.
3. Why is it so important?
The growth of a child is very important. Their little brains are growing and developing, and nutrition is vital. I have read that their bodies will not grow at the expense of the brain. So, if a child is having trouble getting the needed nutrition or using the nutrition accurately, they will stop gaining weight. Their height will be next to slow or plateau. The body will do everything it can to protect the brain. It will let the body “go hungry” to save the brain. But at some point, after weight and height have struggled enough, the brain can be affected.
So if the weight of a baby has
plateaud, as well as the height, you know you may have a problem. The body is using all of its resources to protect the brain, but the head circumference could be next.
Isn’t it amazing how God made our bodies to protect our brain? He is an awesome creator.
Again, growth is all based on a personal curve. Some children just have smaller frames as well as smaller heads. The concern is when the growth slows drastically or stops.
4. My child is not growing. Any tips?
I would suggest always always always talking to your doctor if you are concerned about your child’s growth. It is very important. They can work with you to help you know if it is due to intake or if there is something else going on that needs to be investigated.
Focus on feeding your child foods that get the most calories per ounce in there. For example, if you know your child is only going to eat 2 oz of food, feed them food that gives them 75 calories per ounces rather than 15 calories per ounces. That way you get the most “bang for your buck.” You can also add butter or healthy oils, such as canola oil, to their foods. We add something called “
Duocal” to Beckett’s food. It is basically a powdered calorie. If his pureed meal is only 140 calories, this can amp it up to 190 calories without changing the volume at all. I never paid much attention the calories in food with our older son, but now I have become a calorie checking pro! My day very much revolves around Beckett getting all of his calories. I have found 2 different packages of pureed baby food that are the same size- one boasting a whopping 240 calories, the other 90. Always go for the 240! :)
I have found that as typical babies become toddlers, they get picky and start eating less. This is a great time to focus on giving them nutritious food that is high in calories. A
dietician can help with this. I know cheesy eggs are a big hit for one sweet toddler I know!
5. “He’s soooo tiny.”
Yes he is. Being “tiny” has been something we have struggled with his entire life, and we are working very hard to help him grow. Yes, I am calling it a struggle. It is not a struggle for everyone who is tiny, but for some it really is. Being tiny alone is not a bad thing. God made some people wonderfully petite and very healthy. Being small is not a bad thing. But children should grow. And when they have other concerns, like not wanting to eat enough or some other health problems going on, it is hard.
Be careful when telling people that their children are so tiny because it can be a sensitive subject for some. This can raise a lot of emotion in parents that struggle with failure to thrive. Some parents spend their days revolving literally around food and getting as many calories into their children as possible. I have met many mothers who have to focus all of their attention on their child’s nutrition. It is real and it is exhausting for them. They work to get to appointment after appointment trying to learn why they won’t eat or why they won’t grow. And it is frustrating for a parent to work so hard at something that is supposed to happen so naturally- eating and growing. They’
ve tried strict feeding schedules, therapies, medicines, and in some cases, feeding tubes. Finding just the perfect way to schedule their day to make sure their child gets the most calories. Getting home for feedings because their child will not eat out in public. Juggling when milk is served strategically with when food is served to make sure they are hungry enough for each. Visiting doctor after doctor with no real answer. So be sure to be sensitive to that when you see a tiny kid. It’s not always as easy as it looks.
They might be fighting just to keep them that big and healthy. They might look cute and tiny, but the mom holding them may be not be feeling that way after multiple hospitalizations, weekly weight checks, and daily calorie counts…literally living in a world where every ounce matters. This is a concerning place for a mom or dad to be. I honestly don't take it very personally when a
stanger asks me about his size because I figure I would rather them ask about it. Then I can politely explain that it is something that we work very hard to keep up with and help one more person better understand something that is so often taken
for granted...growth.
Sorry that there was no real update today. I know this was terribly long but it is very difficult to sum up something like Failure to Thrive in just a few words. And I tend to be long-winded. :) I mainly just wanted to get some information out there on one of Beckett’s conditions. We are really hoping to move out of this diagnosis soon! The child is growing!
Yay! Failure to thrive is a real issue that exhausts thousands of parents every day. Thanks for listening, and I hope this helps!
Happy boy! He loves playing in the pillows! He is also sporting one of his new cloth diapers. We have been able to slowly buy him new cloth diapers after the great c.diff clean out. His c.diff seems to be gone! Praying that it stays gone!
He also really likes playing in the water. He gets very excited any time he sees water and laughs, squeals, and repeats, "lalala" (water). (A mosquito got him on his head...)
This little boy (He looks like such a little boy in this picture!) really likes to just stand and let the sprinkler hit him. He loves it actually. Polar opposite of his brother at this age. It is amazing how different, but also how alike they are.
On the move! Look at him go! He is into everything and seems to have no fear at all.
He seems to spend much of his day here.
Evidence that he is still on a bottle at 18 months...but that's okay. I am just thankful that he will take some formula by mouth. It is still very good for him to drink it so we don't mind how he gets it...and neither do the doctors. :) I have actually mentioned it to them a couple times, and their response is, "why?" So, yes, he still has his "ba-ba."
He seems to enjoy crawling into boxes. The problem is how to get out?!?
Messy food! He gave up on using the spoon and decided that scooping it up with his hands was much quicker and more efficient. But we will continue to try to learn to use the spoon! I typically still spoon feed him his food to make sure he actually eats it. He self feeds cheerios and other small crunchy snacks. We are working on his grasp using just his thumb and pointer finger. He prefers to just use his whole hand to grab at food and shove it into his mouth. But we are so thankful that he is eating!! It is such a blessing! Many children with his digestive issues do not want to eat or self-feed.
