Crazy the Odds: Tabitha’s Story

By Renae Baker

Tabitha doesn’t remember her father’s hemophilia B affecting her while she was growing up.  He had a mild diagnosis, and was older when she was born, “so he wasn’t doing crazy stuff.” Nevertheless, she was aware that he had hemophilia and that it was a possibility that she might have children with hemophilia one day.

Tabitha is now married to Travis, and they live in Oklahoma, where she has lived since she was three years old.  Travis works with Cherokee Nation Business and Tabitha with the Department of Veterans Affairs.  They both work from home.  It’s a good year for remote work conditions, too, because while the pandemic was turning the world upside down in March of 2020, their family was undergoing a big change as well! It turns out that hemophilia isn’t the only thing that runs in Tabitha’s family.  Tabitha’s father is a fraternal twin to a sister who has shown no signs of hemophilia in her seventy-two years.

You see where this is heading, right? Tabitha, Travis and daughter Mackenna, who will be four in May, have spent this past year in their little pandemic bubble adjusting to the new family dynamic with baby twin brothers Camden and Paxton.  The parents knew there was a chance that they could be fraternal twins and that neither or only one of them might have hemophilia, but Tabitha and Travis were blessed not only with fraternal twins, but both with mild hemophilia B.  Although they are fraternal twins, their factor levels at birth were only one point shy of each other’s.

During and following the birth there were no bleeding issues; just a little additional pressure applied after “heel sticks.” Because they knew that hemophilia was a possibility, they gave the question about whether or not to circumcise the boys serious consideration.  “Ultimately, we decided that if the boys did have hemophilia, that wasn’t the way we wanted to find out about it,” she said.

In fact, Tabitha and Travis don’t want to green-light any permanent body changes to their children.  “I have an issue with piercing my daughter’s ears.  I don’t want to do that because she can’t tell me that she’s ready for that.  So, by the same token, I don’t want to circumcise the boys.” Tabitha sees it as a cosmetic issue.   “It seems like body modification should be their own decision.  That, plus the possibility of hemophilia made us say, ‘Let’s just hold off.’”

Tabitha lays out a bit of the prenatal experience, “When you have twins you have to go to a maternal fetal medicine doctor, but ours didn’t really know what to do.  They checked my [factor] levels, and said, ‘No, you’re not a carrier.’ And I was like, ‘Wait, that’s not how it works.’”

She’s right.  That’s not how it works.  Dr.  David Clark clarifies: “A woman’s carrier status cannot be determined by her factor levels.   Hemophilia carriers can have factor levels ranging from <1% to over 100% of normal.   A woman with very low levels will probably be a carrier, but women with higher levels may also be carriers.   A woman whose father has hemophilia is called an ‘obligate carrier.’  She will be a carrier because she inherits her father’s X-chromosome, which carries the defective factor gene.   Even though she may have ‘normal’ factor levels herself, she still has the defective gene that she will pass on to her sons.   She has a 50-50 chance of passing the gene on to her daughters and making them carriers.”

Tabitha has never had any bleeding issues beyond heavy periods.  Her father was not a part of The Coalition for Hemophilia B.  Tabitha became connected to the organization through her own research.

Photography by Taryn Starky The Photo Doula

“I’m a ‘give-me-all-the-information’ kind of person, but my father wasn’t, so I was looking through Facebook, trying to find all the groups I could find,” she shared.  Tabitha has made several online connections with groups that have to do with everything from having twins to having hemophilia to having twins with hemophilia.  “One day, I was looking at charities, because I was posting about Rare Disease Day, and the Coalition happened to come up, and I thought ‘THAT’S interesting!’ Because it was specific to hemophilia B.”

Rare Disease Day happens on February 29, during a leap year (a nice little nod to the day being “rare”).  Outside of leap years, Rare Disease Day is observed on the last day of February.

Back to the boys.  Camden and Paxton were diagnosed with mild Hemophilia B after their six-month vaccinations, when Camden’s injection created a “pocket” in his thigh, because they didn’t yet know the injection site needed to be held for five minutes after the shot.

“We were all just playing on the living room floor together, having a good time, and we looked down, and there was this green goo oozing out of Cammy [Camden],” she recalled.

 This resulted from a hematoma that formed at the injection site and prompted them to get the twins seen by a hematologist.  “The first doctor we saw kind of freaked us out,” she admitted.  “She acted like they were going to be little ‘bubble boys,’ and we like, ‘Oh my gosh!’”

The family then went to the Jimmy Everest Center in Oklahoma City where she found relief and positivity.  At this Center for Cancer and Blood Diseases in Children, they met Sarah, a physician’s assistant who has made all the difference in their lives.

“She made us feel a lot better and assured us that the twins were not going to be on medication every day of their lives, just when needed.”

Out of the boys, born one minute apart, Camden has experienced quite a bit.  “Cam is our kid where, if something wrong or bad can happen, it happens to him,” she said.

At two months old, prior to the hemophilia B diagnosis, the doctor picked up on a heart murmur in Camden.  “So, on top of everything else, we have had to go to the heart doctor.  He had a hole in his heart.  Luckily, it’s closed now, but he has a bicuspid aortic valve.” Tabitha continues, “Your heart is supposed to open in three’s, but his only opens in two’s.  It’s not really a big issue.  The hemophilia won’t affect it.  It’s just an extra layer of complexity.”

Tabitha carried the twins to 38 weeks.  “They were both so big they had torticollis which is tight neck muscles,” or, as the Kennedy Krieger Institute’s Cranial Cervical Clinic describes, “asymmetrical posturing of the head or head tilt (otherwise known as “wry neck.”) “So, we’ve had to go to physical therapy to stretch [the neck muscles], and it’s so miserable! Cammy actually ended up in a helmet, 23 out of 24 hours of the day, because he had what they call ‘brachycephaly’, due to the combination of sleeping on his back and not wanting to move his neck muscles caused the back of his head to flatten.” Tabitha is happy to report that he is better and out of the helmet now. 

Tabitha and Travis don’t let the stress of baby, hemophilia, and any other obstacles overshadow the family fun.  With McKenna, the parents were able to let her go pretty much wherever she wanted to explore, but with the twins, Tabitha and Travis realized it was different story.  “We figured out, pretty quick, that – with two of them – if you’re on the floor with them, you’re just constantly bringing them back to the middle of the floor, because they want to go out, and they want to get the plug-ins and whatnot.  So, we have a big fenced-in area in our living room with foam mats.  We know the bumps are going to happen, but we just have to try to mitigate it as best as possible.”

Toddler McKenna wasn’t able to visit her brothers in the hospital when they were born, due to COVID-19 restrictions.  Tabitha confesses, “I had this romanticized picture of her coming in to the hospital, seeing the boys and it being just this moment of ‘Here we all are! We’re a family! Here are your brothers!’ and we couldn’t do that.” She takes a moment to pull the tears back.  “It was fine.  It was just rough because it was not what I had pictured.  You’re so happy that you have these babies, but there is this grief over not having the first born you’ve never been away from for even a single night, be a part of the first day of her brothers’ lives.”

Once the boys were home, McKenna became a big helper.  She loves to fetch items for them and when Tabitha and Travis joke that they’re going to send her brothers to China when they’re acting up, she sweetly and protectively says, “No! You can’t take my brothers!”

While McKenna may not have a complete understanding about her brothers’ hemophilia yet, Tabitha says, “She understands that something is up, but she isn’t old enough to process it.  She’s not one to play rough with them, so that isn’t a concern.” McKenna is learning, from Tabitha, how to be a loving Mommy.  “I was changing Cammy’s diaper yesterday, and she had her little baby (doll,) and I was giving Cammy kisses, and she was giving her little baby kisses!”

When asked what advice Tabitha has for other parents of children with hemophilia B, she shares, “Slow down and breathe.  Know that there are enough resources now.  While our boys’ lives are going to be a bit different, there are things we’re going to have to modify, it’s not an ‘end-all-be-all’ situation.”

“Give yourself grace,” she continued.  “It’s not your fault.  Stuff happens.  Getting plugged into the community and getting as much information as you can is essential.” She also urges people to find a doctor who is educated about hemophilia B and with whom you can have a good relationship.  “Getting the right medical team in key.”

For someone just starting out who doesn’t know how to put together a great medical team, Tabitha suggests, “Facebook is one of best resources right now.  Try key words like ‘hemophilia,’ ‘twins,’ ‘birth,’ “local and national.’ Just start there and search.”

Tabitha also uses Google, but she remembers that it was Facebook that led her to Kim Phelan and The Coalition for Hemophilia B.  “Kim is amazing, and the Coalition is so open and helpful!” Tabitha exclaimed.

Since discovering the Coalition during the year of remote events, Tabitha and her family are looking forward to the days when they can attend in-person events hosted by the Coalition.

In the time since this interview concluded, the family found out that their daughter is also a mild hemophiliac and a carrier.  “The hardest part of that was knowing that her possible children could have it one day,” Tabitha added.  “But no need to borrow tomorrow’s worries.”