This story is part two of the Watts’ family story. Read the first part here.
Jodi Watts’ days as a stay-at-home mom with a baby with Goltz syndrome were filled with appointments to attend to Katherine’s many needs. A home health nurse visited weekly for the first year to check her weight. Various therapies continued.
It was tough for little Katherine to bond with such a large team of care professionals all wearing masks. Some doctor visits had to be on Zoom given COVID protocols, and they were not always helpful since the doctor couldn’t see Katherine in-person. The process was often frustrating.
As a mom, Jodi’s goal for Katherine is to get to a place where she doesn’t need to see so many doctors. The Watts were thrilled to no longer see orthopedics after the doctor said Katherine’s bone growth had spurred her left side to catch up with her right side.
But, the long list of doctor visits continued for urology, dentistry, dermatology, gastroenterology, and others. Katherine also has had two surgeries in her two years of life. When she was born, the lens in her left eye didn’t form properly and wasn’t in the correct position.
She had outpatient surgery when she was two months old to remove the lens of her left eye in order to give her a chance at being able to see with that eye. Her second surgery at 18 months old was to correct issues associated with kidney reflux.
“Like with regular reflux, it wasn’t filtering everything out all the way, so it would back up into the kidneys. Out of the three grades of kidney reflux, she had the third kind, the worst.”
Katherine continues to see a GI specialist. She’s smaller than average, which is typical for individuals with Goltz syndrome. But, she continues to grow on her own curve.
Finding A Team of Physicians
According to Jodi, it’s been frustrating to work with doctors who don’t know much about Goltz or who are not interested in learning about it.
“We’ve been turned away by a few doctors who were just not comfortable I guess, seeing someone like her, or having someone like her as a patient. It’s frustrating, but at least they were up front that they were not ready to care for her. With one of the GI specialists, they made me feel like the worst parent because she was so small. I didn’t want someone else to judge me because they didn’t understand.”
Jodi says she sends Goltz information from the NFED website to each new doctor in advance. She asks them to read it ahead of their first appointment.
I tell them, ‘Here’s the information. It will save us a lot of time if you read this ahead of time, and I can answer any questions you have as opposed to me spending most of the appointment telling you what my daughter has.’ Most of the medical professionals have been great about doing that.– Jodi Watts
Michael is an enlisted aide in the Marine Corps, which means their young family has moved four times in their 10 years of marriage. Each move means finding a new team of doctors and educating them about Goltz syndrome.
Meeting Their Goltz Family
Since Katherine’s birth, the Watts family had been living their Goltz journey online, interacting with other families and the NFED staff on Facebook. But they decided it was time to meet others in-person at their first NFED Family Conference in St. Louis last month.
“It was very overwhelming in the best possible sense…It was wonderful to be able to meet folks and it’s like, ‘Oh my goodness, this is a lot.’ But it was wonderful to not just get to meet the Goltz family but meet the whole [ectodermal dysplasias] family. I wish conference could have been a little longer!”
Conference gave them the opportunity to meet the actual person behind the profiles of all the people they met on Facebook.
“With conference, we got to know people like Jodi, Mary, Kelley and Becky from the NFED staff. I’m like, ‘That’s what you look like! You’re not a computer. You’re not a robot.’ You actually exist. I have never felt more welcome, not that we expected really anything different.”
Jodi and Michael especially enjoyed the session dedicated to Goltz syndrome. They met with other families who were gracious in telling what has worked for them.
We feel a lot more comfortable in our journey. Michael and I were discussing that we loved how people were saying, ‘This is what we do. This is what our journey looks like. This is what we’ve done for our kids.’ They weren’t like, ‘This is what you should do.’ They were just sharing their stories and kind of like, ‘Do with this information, what you will.’ It was so nice because with this syndrome being so rare, we feel like we are more the experts.– Jodi
Jodi found another NFED mom, Sheri Ezell, at the Conference who was a military family and understood about the challenges of navigating Tri-Care, the insurance plan for military families. Jodi and Michael gravitated to her since she could relate to that experience.
“That’s another reason why we were so excited about conference and going,” Jodi said. “There are people who understand. They get it.”
Celebrating Key Milestones
Because of the many symptoms Goltz syndrome causes, children may meet developmental milestones a little differently than peers who are not affected by Goltz.
“We love the Facebook group because everyone celebrates everyone’s accomplishments,” Jodi said. “Everyone’s there for everybody else. We found very quickly that when you have a child with special needs who’s a little behind, these milestones that are met, mean a lot more.”
While Katherine has her challenges, she’s doing great! She’s learning new sounds and words but is still a little behind verbally. She does have some papillomas on her mouth. Before they can treat them, she’s had to get an endoscopy to ensure that she didn’t have any in her mouth, throat or lungs that would inhibit her breathing with the anesthetic. Like many of Katherine’s health issues, it’s not simple.
“She’s so smart and she’s really growing,” Jodi said. “She knows things and wants to learn more things. Sometimes there’s just that little disconnect between her brain and her mouth. Our daughter is not handicapped. There’s really nothing physically she can’t do right now. As for when she gets older, we’re just not sure. So, we’ll cross that bridge when we get to it.”
Because Katherine doesn’t sweat, the family plays outside at cooler times of the day.
“She loves the water; she loves being outside. She wears some of the cooling bandanas we got from Olivia [Daniels] at the Family Conference.”
Loving Their Life
Despite the new reality, Jodi and Michael say they would never change their lives.
“We wouldn’t change Katherine, because she is perfect. She is wonderful, and she is curious. This is our life, and it’s wonderful. It’s sweet. To know Katherine is to know what joy looks like.”
This southern mama has clear dreams for her little girl.
I want Katherine to be able to do anything and everything that she wants with as little limitations as possible. I want her to embrace the Goltz, knowing that yes, she has things, but it does not have to limit her. I want her to be able to tell her story. I want her to be able to you educate others for herself. She can do anything she wants! She knows that. She tests those limits and those boundaries every day, but I wouldn’t have it any other way.– Jodi
“We are dealt the hand we’re dealt. The only thing you can do is make the best of it. It won’t always be the best of times but it’s certainly not always the worst times. Life is what you make of it. Did I imagine myself with a special needs child with a very rare syndrome, no. But I’ve got one and I love the mess out of her!”