Family invites walkers to celebrate son’s birthday for awareness effort
At first, Tucker Von Hatten is a little shy. But it doesn't last long.
The Highland 2-year-old's curious eyes are the first thing to zoom in on you. The rest of him soon follows. Next thing you know, he's made you his friend, and he's ready to head off to make another.
"Let's blaze," Tucker yells as he sprints down the hall with giggles trailing behind him.
As he runs away on wobbly toddler legs, he could not seem more carefree. However, Tucker has been through more in his short time on earth than many will experience in a lifetime.
When Billy and Rachel Von Hatten had their first child, Bennett, now 5-years-old, everything went perfectly. But that was not the case with Tucker.
The doctors first noticed it while he was still in the womb, but just days away from being born. They told his parents that Tucker had something called congenital diaphragmatic hernia (CDH).
"The first thing they told us was not to Google it, which of course, we Googled it," Rachel said.
Tucker's condition meant he would be born with a hole in his diaphragm.
"They don't know why it happens or how it happens," Billy said.
The hole can be large or small, but it usually allows the lower organs to migrate up into the chest cavity.
About 1,600 babies are born with CDH every year in the U.S., or one in every 2,500 live births, according to the Children's Hospital of Philadelphia. The hospital says this diagnosis is comparable to the same number of babies are born with cystic fibrosis or spina bifida. The survival rate is about 50 percent.
"In Tucker's case, his small intestine, his colon, his spleen, and part of his left kidney, were on the left side of his chest," Rachel said.
When the abdominal organs move to the chest, it gives the lungs little room to grow. This means Tucker's left lung was considerably underdeveloped.
"It was a little scary," Rachel said.
A rough beginning
When Tucker was born in 2016, he was immediately taken from his parents, intubated and rushed to the neonatal intensive care unit, where he would be for the next month.
"And it was a roller coaster ride the whole time," Rachel said.
Babies with Tucker's defect usually have reduced blood flow to the lungs and can be at risk for pulmonary hypertension, as well as asthma, gastrointestinal reflux, feeding disorders and developmental delays. So when they enter the world, CDH babies need extra precautions taken for them while in intensive care.
Rachel said Tucker was heavily sedated and put in a separate dark room with noise reduction to help prevent stimulation.
"The goal is to keep them as calm as possible until their bodies get stronger," Rachel said.
The Von Hattens were not allowed to hold him, and there were specifics touching limitations as well.
"Imagine not being able to hold or touch your sick baby when that's all you want to do," Rachel said.
Tucker got his first scar at 4 days old. During his corrective surgery, doctors moved his organs back down, and closed the hole in his diaphragm.
Two days later, Rachel held him for the first time. But Billy would have to wait two weeks. Then finally, after exactly 28 days in intensive care, Tucker's parents brought him home.
"But the journey doesn't end with CDH babies after they come home," Rachel said.
In December, Tucker was brought back to the hospital with a respiratory virus, for which he had to be intubated. After another five days, Rachel said he started rejecting his feeds. Doctors found a bowel obstruction, and the blockage had to be fixed. Tucker got his second scar and an 18-day hospital stay.
"We spent his first Christmas and New Year's in the hospital, unfortunately," Rachel said.
The battle continues
Tucker's parents said they hope he is now over hump, medically. But, it's wait-and-see.
As he grows up, Tucker will more prone to asthma, allergies, bowel obstructions and illnesses due to his CDH. But the Von Hattens said their biggest concern is that his diaphragm will re-herniate, though the risk decreases with time.
While Tucker can continue living as the rambunctious boy he is, the Von Hattens said their battle continues in a different way. Like many families affected by the illness, the Von Hattens have set out on a quest to spread awareness about the defect.
"I would say we try to raise awareness so someday we don't have to," Rachel said.
Tucker is a part of a study named DHREAMS, which was created to help the understanding of the defect. Tucker will have an annual DHREAMS clinic visit in June. During the visit, he will undergo a chest x-ray, and meet with a noeonatologist for a check up. Rachel said data will be collected for the study to see if there are any other related developmental delays or issues for CDH kids as they get older.
The Von Hattens also wanted to remind the public that April is CDH awareness month and April 19 is CDH Action day. On this day, CDH organizations ask that citizens simply take action by donate, volunteer, hold fundraisers, march in parades, share stories, or do whatever is needed to raise awareness.
The Von Hattens took action by starting their own annual event.
Last year, the Von Hatten's held the first Tucker's Trek in Glen Carbon. The event was a one-mile awareness walk through which the Von Hattens raised $4,000 for CDH International, a non-profit organization that supports CDH research and families. This year, the race comes to Highland one day before Tucker's second birthday.
The event, which is now a 5K walk/run, will be on May 19 at Lindendale Park. The walk will begin at 8 a.m. and last until 10 a.m. This year, Rachel said funds will also go to CDH International. Participants will be guaranteed a shirt if they register before May 4. Attendance prizes and post-race cupcakes will also be provided to celebrate Tucker's birthday.
Those interested can register online or send a form to: Tucker's Trek, 739 Arkansas Road, Highland, IL 62249. The fee is $25 until May 4, and $30 after that date and on race day. Checks should be made out to Tucker's Trek.
For more information, visit the walk's Facebook event page, email email@example.com or firstname.lastname@example.org or call 618-210-9261. To follow Tucker's story check out the Tucker's Tale Facebook page.
"The more people that will be aware and want to donate to this organization, the quicker we will find a cure and it won't affect them," Rachel said.