Helping heal Harper’s heart
November 22, 2019
It quickly became something else.
“They told us that they couldn’t see all four chambers of the heart but you know maybe it’s just the way that the baby was laying,” Brittany said. “And so, you know, little bit nervous because you don’t want to hear anything like that but thinking it’s going to be okay so they recommended we go to a specialist which wasn’t until about two or three weeks later, so kind of had to sit on the what ifs for about two or three weeks.”
The possibility there could be something wrong didn’t enter the mind of her husband, Redhawks assistant basketball coach Ben Manning, who went to work as usual on the day of the follow-up.
“I didn’t think anything of it the first time,” he said. “So, when my wife went in for the follow up, I didn’t even go with her, I thought, it’ll be fine. So she called me when I was at here at Liberty right before basketball practice, and went home. It’s just devastating.”
Their unborn baby girl, Harper, was diagnosed with Hypoplastic Right Ventricle with Pulmonary Atresia meaning that both the pulmonary valve and right ventricle are underdeveloped disrupting the blood flow and therefore oxygen levels.
“Honestly, a lot of tears is really hard because you want the best for your kids,” Brittany said. “You just visualize your new family and what you’re going to look like and what you’re going to do and we knew immediately that things would be very, very different. And there was a lot of uncertainty a lot of hard.”
Choosing Dallas Children’s Hospital for Harper’s care, the Manning’s were able to fully comprehend what the diagnosis meant for them and their family with the help of Dr. Penn Laird, a pediatric heart specialist.
“They have programs there as well,” Ben said. “That we were able to meet with people and get a lot of information so to prepare for her birth and what it would look like and how, like what’s our role and everything.”
On March 18, 2019, Harper Manning was born weighing 6 pounds and 2 ounces.
Harper, however, had a long road ahead.
This began a roller coaster of recovery with many ups and downs.
On April 1, Harper went into cardiac arrest. Able to get her stable, doctors found yet another problem: her liver.
Throwing more into the mix, doctors were also concerned with her spine and brain.
Running a variety of tests, the results came back and Harper was cleared for both tethered cord and biliary atresia. But doctors predicted that Harper will learn at a slower pace and will likely need physical therapy, occupational therapy, and speech therapy in order to reach certain milestones.
Finally on June 1, Harper was allowed to go home for the first time.
It didn’t last long.
The next day, June 2, Harper was admitted back into the hospital for an intestinal infection.
Then it was back home again, and then back to the hospital for pneumatosis in her intestines.
It was now time for her first open heart surgery.
Sept. 6 rolled around and Harper underwent the Glenn Procedure. After seven hours, the surgery was a success in rerouting her blood flow, widening the hole in her heart, and removing and clamping her PDA stent.
“She’s strong little girl and she’s been through a lot,” Brittany said. “We’ve been through a couple surgeries, she’s had a lot of procedures done. That’s really hard on Ben and I, because we’re watching the whole thing. I think what I’m thankful for, for this whole thing is Harper’s not going to remember any of this.”
At this point, Harper began feeding and was weaned off sedation medication. Although she still has more hardships that lay ahead, the Mannings are thankful for the small victories.
“Harper I feel like has handled it like a champ,” Brittany said. “It’s been tough on us as parents to go drive down to Dallas and a lot of little things, you know, go up the elevator and find a room but, Harper has shown us that she’s an incredible individual and she’s really strong and she’s going to get through all this and that, that has really kept us going. I think more than anything.”
She and her parents will need to be strong as in three to four years, Harper will endure her second major surgery known as the Fontan Procedure in order to connect her Pulmonary Artery to her Inferior Vena Cava.
Hospital and family life
Spending over 200 days in the hospital, the Mannings are working to get to the finish line. However living in the hospital can be jarring.
“We are coming up on seven months of being in the hospital,” Brittany said. “It’s been quite a roller coaster, sometimes we feel like we’re getting used to hospital life which is not fun to do you don’t want to get used to hospital life.”
“It’s not a very pleasant place,” Ben said. “You have to check in at the front desk, you take the elevator and you go find a room and it’s a very small space, and there are constantly people coming in and checking on her and giving her medicine or an X-ray or an echocardiogram and it just goes on it never ends. I don’t think Harper gets a lot of sleep as well.”
She’s not the only one.
“We found out real early that spending the night at the hospital is, it’s nearly impossible,” Ben said. “You’re not going to get any sleep. We have spent you know many nights there. But for the most part, you know, we’ll come home at night. We do have a three year old daughter at home as well. So we’ve tried to keep life for her as normal as possible.”
But one thing that did change was Brittany’s job status. Leaving her job of teaching and coaching at Vandeventer Middle School, she felt like it was the right decision to be there for her family.
“The decision to not teach was incredibly difficult just because I love coaching and teaching so much and the thought of waving that, I struggled with that,” Brittany said. “But then when you just look, Harper’s the most important thing and it made it pretty easy. So we decided for me to stay home. It’s been pretty good. I do miss the court but Harper is the most important and Payden.”
At Dallas Children’s Hospital, however, they have found a steady support system.
“[Brittany]’s met a lot of other moms, a lot of other families,” Ben said. “Sometimes you just meet people in the hospital organically, and we’ve been in probably I would say ten to 15 different rooms and you just meet people and you just talk and you know it’s it’s a not very fortunate situation but you have something in common and you just sit there and you talk with people and you know you find support that way.”
Trying to juggle that and their 3-year-old daughter, Payden, the Mannings work to be there for both daughters.
“Living in and out of the hospital is incredibly challenging because you want to be in both places at the same time,” Brittany said. “You want to be there with Harper, but you need to be here with Payden or we need to be. There’s so many places that we feel like we’re really stretched to be.”
“I think Payden our three year old daughter. She’s not 100 percent aware, aware of what’s going on,” Ben said. “She sort of understands that Harper is sick, and she definitely knows that she’s at the hospital. I think it’s tough on her. They’re very rare times that all three of us are together. Most of the time, I’m at work. And, you know, Brittany’s at the hospital, and she’s at school. It’s usually just I pick her up from school, take her home and Brittany’s still at the hospital, and so on the weekends, I go to the hospital, Brittany stays with Payden. Very rarely are we all three together.”
Despite her limited understanding of what is happening, Payden is growing into her role as a big sister.
“She does understand a little empathy like she wants to pray for Harper every night she understands that she’s sick and the few times that pain has been able to go and see Harper,” Ben said. “She loves to go see Harper and she likes to go to the hospital because she gets to see her and she hugs and kisses her and it’s really, really sweet. It’s been tough on Payden, but she’s handling it as well as I think is a three year old kid.”
Community and family support
For just one of her major surgeries, it is estimated that it will cost the Mannings $30,000 in out of pocket expenses. To help offset the costs, a GoFundMe has been set up to benefit the family.
“I’m very humbling,” Brittany said. “I think that the outreach of support has been amazing. It’s been emotional to think that so many people and strangers just want to reach out and support us whether it’s financially or just a hug and somebody’s telling us that they’re with us and they are thinking about us and praying for us.”
Financial support for the family has extended beyond the GoFundMe. In October, the volleyball team hosted a successful fundraiser at their game against Reedy High School.
“I can’t thank coach Womble and the rest of the volleyball staff enough,” Ben said. “It shows their heart, and they create such a family environment within the coaching staff, it was great. Not only did Liberty volleyball participate, I was surprised that was the Reedy team also was involved. They had shirts and they made a big sign for Harper and brought it to the game and it’s now hanging up in our room.”
From fundraisers, to donations, the Mannings are in awe of the support they have received.
“It’s the whole generosity from not only people that we know but complete strangers it’s been overwhelming,” Ben said. “It’s the amount of empathy people have shown to us and that they care and they care for us and care for Harper.”