VACTERL Diaries: Toddlers
Milestones between ages 1–3, back surgery, and 10 tips to get your kiddo ready for grade school
Introduction
My daughter Sawyer was born with VACTERL Association (vertebral defects, anal atresia, cardiac defects, tracheoesophageal fistula, renal anomalies, and limb abnormalities) — a rare congenital birth defect that occurs in 1 in 10,000–40,000 newborns. She was fortunate to be born with just two congenital defects — a lower imperforate anus and vertebral abnormalities (aka “two points on the VATER”) vs. many children who are born with many more complications. Sawyer is now 20 years old and thriving in her third year of college. She went through many years of struggle with chronic constipation, a sphincter that had atrophied, a year in a body cast, and four surgeries. As a family, we are on the other side of this condition in many ways. I am using this series as a way to share stories and lessons learned to other VACTERL parents — and to give hope for a better future ahead.
If you landed on this installment first, I encourage you to read my first two entries before continuing. These will give you more context: 1) Surviving and Thriving with VATER/VACTERL Association and 2) VACTERL Diaries: Newborns.
Disclaimer: In this series, I will not pretend to be an expert on VACTERL or the condition’s levels of severity for each child and family. I can only speak to my personal experience as a parent of a child born with VATER and the ups and downs we experienced throughout her formative years. For professional counsel and community, please refer to the resources at the end of the article. Always know you are not alone.
VACTERL: The Toddler Years
Your little bundle is a “toddler” between ages 1–3. “Your child is advancing from infancy toward and into the preschool years. During this time, his physical growth and motor development will slow, but you can expect to see some tremendous intellectual, social, and emotional changes.” — HealthyChildren.org
VACTERL toddlers may or may not hit milestones at the same rate of speed as non-VACTERL kiddos, but they are precocious nonetheless. Like many children I see on the VACTERL parent advocacy groups on Facebook (see the end of the article for links) — these children look no different than kids born without abnormalities. They are beautiful in every way any other child is with fuzzy hair, sweet smiles, and adorable babbling. Other milestones according to the Center for Disease Control (CDC):
- Crawling
- Walking
- Jumping
- New awareness of surroundings
- New exploration
- New independence
- New defiance
- Recognize themselves in the mirror
- Imitate behavior of others
- Starting to talk
- Follow instructions and directions
So what this means is your once tiny babe will now be into everything! At ages 1–3, Sawyer was unstoppable. I consulted her baby book for some stats:
Age 1
- Height and weight: 2’, 6” tall, 20lbs (5th percentile)
- Sayings: mama, daddy, thank you, hi, bye-bye, baby, kitty, papa, doggy, please
- Toys: Snail stack ‘ems, Intellitable, Xylophone, pop-up animals, ball, stuffed toys
- Favorite Books: Veggie Tails, Bearington Bears, pop-up Snow White and Cinderella, Dr. Seuss
- Surgeries: Ear tubes at 18mo due to chronic ear infections since birth
Age 2:
- Height and weight: 3’ tall, 25lbs (5th percentile)
- Sayings: Hi mommy, I’m pretty, No way, Love you
- Toys: Mickey Mouse, Minnie Mouse, Larry Boy, ice cream set, coloring books, puzzles
- Favorite Books: No David, Lorax, Green Eggs and Ham, Monster Munchies
- Surgeries: Spinal surgery #1 with cast #1 and casting #2 under anesthesia
Age 3:
- Height and weight: 3’2”, 28lbs (5th percentile)
- Sayings: Too many to keep track of. She was in paragraphs by then.
- Toys: Dolls, stuffed animals, puzzles, coloring books, anything she could stack and knock over
- Favorite Books: Dr. Seuss, Shel Silverstein, and everything related to Disney characters, The Wiggles, and Veggie Tales
- Surgeries: none!
Spinal Surgery on a Toddler
Sawyer was 2-years/3mo old when she had back surgery with Shriners in Spokane, WA. In 2002 she was one of their youngest patients receiving spinal surgery and the youngest they had ever cast.
The surgery:
It was hard, unpleasant, horrifying — everything a parent would expect. It lasted about five agonizing hours but she got through it OK. We chose to have the grandparents surround us for moral support. We were happy with the decision.
In recovery:
She was remarkable. Her vitals were strong and she was quite chipper and happy. Her pain was managed so we never saw her suffer.
Hospital stay:
We were in a private room and both stayed overnight for 10 days. It was tiring but we did not want to leave her side. The cafeteria provided excellent food and the playroom was a constant attraction for Sawyer.
Casting day #1:
It was hard. She was scared and screamed and fought during it all and throughout most of the day. It took nine hours. Cast #1 was purple, weighed 7lbs, and went down one thigh. She wore it for three months.
Riding in a car seat:
With the thigh cast she had to be in a harness and lay down in the back seat. We strapped her in with a harness similar to those worn by parachute jumpers.
Recovery stage:
She was home for six weeks before returning to daycare. Her dad and I traded off with time off work and had help from grandparents. Everyone truly stepped up. She adjusted quickly but tired easily. She ate well and found her balance and got around pretty well by the time she returned to daycare.
Dealing with diapers:
We went with a size 4 for underneath the cast — stuffing the backside of the diaper up into the back of the cast and tucking the front of the diaper up inside the front of the cast. We then used the diaper tabs to secure the diaper as best we could. Over the top of the size 4, we used a “Goodnights” Pull-Up medium diaper to secure everything and ensure that the diaper didn’t slide down or let anything leak out. We had two bad accidents where to clean, we used a rubber spatula and wrapped it in a wipe.
Bathing:
We used moisturizing Johnson & Johnson Cleansing Wipes — typically used with newborns. We wiped her down with a warm wipe each day over all of the spots we could reach. We sometimes used a little spray deodorant to freshen and we always slathered her in lotion after each cleaning to preserve her soft skin.
Washing her hair:
We equipped the kitchen faucet with an extendable spray wand. We used an egg crate to the left of the sink and put a towel over the top. We loosely tied a tall plastic garbage sack around her neck like a cape and laid her down on her back with her head toward the sink (works best with two people). One person held her back and supported her head while the other washed her hair with the wand using shampoo and conditioner. Full disclosure — she fought us most of the time. She did not like to feel “stuck” and this position made her feel vulnerable. We tried to keep our spirits up, play music, make her laugh. Some days were better than others.
Casting day #2:
Because her first casting experience was traumatizing for everyone, we requested sedation. This required an overnight hospital stay. The second casting went very smoothly. It was green, did not have the thigh piece, and weighed about 7lbs. She was in it for three months and could sit in a car seat normally (although for limited time because it cut into her thighs and would hurt after a short time).
Overall disposition:
Kids are truly amazing. She was hardly phased through most of it and acted like a normal two-year-old. She adjusted quickly to daycare — finding her own way quickly. The other kids treated her well and she did not experience any bullying. Overall we maintained relative normalcy — going out to dinner and outings, visiting friends, and enjoyed holiday excursions like the Christmas tree farm and pumpkin patch. She jumped, danced, ran around, and played like any normal toddler.
Our VACTERL Toddler — Age 3
By age three Sawyer was done with surgeries. We were happy to be passed this stage of her life, but then entered a new phase of her pre-school years, potty-training, re-setting behaviors, and getting her on a “normal” sleeping schedule.
Sawyer was our first child so we were very inexperienced parents. Because she was born with congenital issues and required surgeries, we did a terrible job with discipline and setting boundaries. She did not sleep through the night for more than two years. She threw tantrums when things did not go her way. This girl could be vicious — she would hit, scream, bite, and even drew blood by hitting my nose more than once. She was a picky eater, stubborn, and definitely had a “princess” mentality.
We had some serious adjustments to make.
So dear parents of VACTERL toddlers — here are 10 tips to get things back on track:
- Force a manageable schedule for eating, sleeping, and playtime
- Do not allow back-talk and defiance without consequence (e.g. taking away toys, time-outs, no sweets)
- Adjust the diet to increase high fiber, fruits, and veggies, and limit the sweets that inspire hyperactivity
- Wean kiddo off the pacifier or thumb
- Educate the grandparents and caregivers on new boundaries so cutie-pie doesn’t try to pull a fast one
- No more sleeping in bed with the parents (this one was hard)
- Start potty-training and coaching like a pro — hit it head-on; it may take a while
- Allow (if not force) independence with picking out clothes, getting dressed, and deciding what activity kiddo wants to do that day
- Instill empathy and kindness toward others — friends, neighbors, family (they are so used to being doted on — help them dote on others for a change)
- Let them self-soothe and “cry it out” — hardest one of all for a VACTERL parent
Wrap-Ups
Oh, the toddler years. These were awesome and challenging. Sawyer was amazing, strong, defiant, and insatiable. I don’t think I have ever been more exhausted than I was during those years of her life. There were so many emotional ups and downs, and then a solid year of adjustment and re-set to get her on track so she would not be a nightmare when she went into preschool. I think the greatest challenge was finding the strength to treat her like a normal kid. I wanted to cloak her in bubble wrap and protect her from everything. Slowly I let this mentality relax so she could experience life fully. Next up… grade school. Welcome to the jungle.
Resources
- VACTERL Association Support Group (website)
- VACTERL Association Support Group (Facebook Group)
- VACTERL Network (website)
- VACTERL Network (Facebook Group)
- ONE in 5000 Research Group (private Facebook Group)
- VACTERL Association (private Facebook Group #1)
- VACTERL Association (private Facebook Group #2)
- VACTERL Association Support Group (private Facebook Group #3)
- National Organization for Rare Disorders (NORD) and VACTERL Association resources
- National Center for Advancing Translational Sciences (NIH)information about VACTERL association
