All You Wanted to Know About Failure to Thrive

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 30th 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 10th percentile and continues on in the 10th percentile is following a growth curve. They would not be termed failure to thrive. A child who is in the 75th percentile at 18 months and drops to the 30th percentile at 2 years would raise a red flag. A baby who is in the 50th at 9 months and drops to the 20th 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 75th percentile to the 25th 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.html
You 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!

Next Steps

Our sweet little guy is nearing his first birthday. In some ways, time has absolutely flown by, but at the same time, I can't remember my life before him. He has been an amazing addition to our family, and we are so thankful that he is doing as well as he is. It absolutely melts my heart to watch his big brother love him in huge ways. His smile and laugh really do have the ability to light up a room. He is precious, and I feel so blessed to get to be his and Brant's mother.

As his birthday draws near, we still have some unanswered questions regarding his health. Many of the "what-ifs" over the last year revolved around how he was doing at magic number one. The doctors have wanted to give him time to catch-up and gain some ground before looking at more possibilities. There is a protocol to follow, and I do understand and appreciate their approach. I think they believe in giving kids who have a sort of rocky start to growth and digestion a chance to recover and thrive before subjecting them to more testing. Many children do tend to "take off" after the appropriate medical intervention and of course, that is still our hope for Beckett. When he was first hospitalized with the diagnosis of failure to thrive, we all thought that once on the proper special formula and reflux meds, he would grow and chunk up. To be quite honest, I think he has surprised the doctors as he continues to be a "little puzzle." His formula intake is good, and he exceeds their minimum calorie count every day. We are still looking for an explanation as to why our son doesn't grow at the typical rate and why his digestive system basically doesn't work. We have learned that sometimes there is no "why," but we want to give it a search first.

So, after months of research and prayer, we have decided to contact a team of doctors at the Colo-rectal Center for Children at Cincinnati Children's Hospital Medical Center. This is the number one rated children's gastrointestinal department of all the children's hospitals in the nations. I guess we figured if we are going to get a second opinion, why not go to the top rated place? This is the only colo-rectal center for children in the nation, and they have helped countless children with severe idiopathic constipation, Hirschsprung's Disease, and other GI disorders. I have heard many positive stories from other mothers. So I emailed one of the lead doctors, and they are interested in helping us with Beckett. We have sent all of his medical records and radiological images to Cincinnati, and we are waiting for the team to review his case, and decide if they have any ideas of how to help Beckett. They will then decide if we need to pack up and head to Cincinnati so they can treat and care for our little guy. Of course, the doctors there could also decide that there is nothing they would do differently with their treatment then what is already being done. From my research, I do know that if there is no other diagnosis (such as Hirschsprung's disease), they treat with the same medications as our doctors here. It could be up to 6 weeks before we hear their review of his case. We are just looking forward to having another set of eyes review Beckett's history to ensure that we are doing everything possible for him.

We are thankful for our doctors here and the great job they have done "maintaining" Beckett. We are blessed that he has been watched very carefully and has avoided infections such as enterocolitis (a serious infection of the small intestine and colon which is often a complication of Hirschsprung's Disease or severe, chronic constipation.) They have been steady and helpful throughout the course of the year, constantly reminding me that it is a marathon, not a sprint. We have to troubleshoot and try new and different things slowly in order to get a better idea of what is going on. It can just be so hard as a parent to have patience when it comes to your child's health care. While we think TCH has done a good job of keeping Beckett GI system moving (he now vomits very rarely and has a bowel movement every 1 to 2 days), we are looking to Cincinnati for the possiblility of a larger umbrella diagnosis that might cause his list of problems or for an unlikely oversight of Hirschsprung's. We also would just like to hear from another set of doctors about how they would treat our son's motility disorder in order to possibly have some options.

In addition to the doctors in Cincinnati reviewing Beckett's case, our doctors here are beginning to look into more possible explanations for his slow growth such as rare metabolic disorders. After he turns one, and we see where he is growth-wise, his GI team will consider what needs to happen next, if anything. For now, our pediatrician has decided to refer us to a geneticist to get the ball rolling with that set of testing. Our appointment with the geneticist is not until the end of November, but he is on a waiting list should something become available sooner. We are hoping for sooner.

We spent some time deciding if we wanted to share all of this information here, but ultimately what we need right now is prayer. We are juggling a lot in this next phase of Beckett's health care...trying to learn why? Please be praying that as the doctor's in Cincinnati review Beckett's medical history, they would be careful and wise. I pray that God would make any important and pertinent part of Beckett's records jump out to the doctors. I pray for patience while we wait for these next steps to take place. I pray that we will feel confident in the answers we get, while at the same time, having the wisdom to know when to keep looking. I pray for peace. Please pray that Beckett would just miraculously start gaining weight and digesting his formula on his own (without drugs). We believe in prayer, and we are so thankful for all of your prayers for our family. Thanks for checking on us and praying for sweet Beckett and the doctors as this next phase of diagnostics begins. Thank you.

P.S. I apologize for the wordiness of this post...I am one tired momma, and sometimes I can't get all my thoughts together. Thanks for understanding. :)

Results

So, according to Ryan on The Office, blogging is out. But I continue on...mainly as a way to remember these days. I think a blog can create a wonderful virtual baby book in a way. And being a mom to young children is a precious season that flies by so quickly. I easily get lost in the busy-ness of it all, the diapers, the sippy cups, the silly questions, and so many firsts... So this is my way of remembering my days as a mom to little ones, even if very few people ever glance at it.

So, late in the day yesterday, the nurse at the surgeon's office called. She told us that the pathology was not conclusive of Hirschsprung's Disease. I honestly did not know what to feel in that moment. I felt relief that he would not be undergoing such an operation, but at the same time exhausted to be back at square one. I think in a way Hirschsprungs felt like it could be the beginning of the end. I don't think any parent wants their child to be diagnosed with HD, but something continues to bother him and his system and an answer to "why" would be a sort of relief...a relief from wondering and from testing. Our sweet little one would have had to undergo surgery, which is always scary, but we hoped he would take off from there and begin to catch up and feel good. I think we could see an end in sight as surgery could possibly "fix" our little man. However, mostly we are thankful that he is not requiring surgery because there were complications that could happen and recovery can go several ways. I think our best case scenerio would be that he would just grow out of some kind of horrible reflux, and begin to "thrive." So now, here we are wondering what will come next.