In honor of American Heart Month and Valentine’s Day, we bring you a beautiful story today about a local mom’s fight to save her beautiful baby girl.
Megan Sides was 26 weeks into her pregnancy, excited to learn the gender of her baby, when her doctor instead told her something was wrong. Weeks of tests later, Megan was told her baby had hypoplastic left heart syndrome (HLHS), a rare congenital heart defect where the left side of the heart is critically underdeveloped.
Megan did everything in her power to arm herself with the knowledge she needed to fight for her baby birl’s future. Smarty Charlotte, we’re proud to introduce you to this Smarty Warrior!
Meet Megan Sides, the perfect mom to meet this Valentine’s Day…
Megan’s Smarty Mom Stats:
Mom of: Annabelle (3)
Years in Charlotte? 24
Occupation? Full-time mommy and nursing student
Tell us about the day Annabelle was diagnosed with HLHS.
Annabelle was diagnosed in utero when I was 26 weeks pregnant. I went in for a routine ultrasound super excited to find out the gender of my baby when I got the news that rocked my world. The doctor told me that something was wrong and he wanted to send me to a high risk maternity center for a more in depth ultrasounds. I waited for a few days for them to schedule that appointment where they too determined that something was very wrong. After an ultrasound and an amniocentesis, she was diagnosed with a congenital heart defect called hypoplastic left heart syndrome. I wasn’t exactly sure how to cope with the news and I was extremely uneducated on heart disease in infants so I knew that I had a lot to learn and that it was going to be a long journey.
How did her diagnosis affect the rest of your pregnancy and delivery day?
The rest of my pregnancy I was followed very closely by the high risk center and also cardiologist. I was constantly worried when I didn’t feel much movement out of her but I was still like any other mom very excited to meet my sweet girl when she got here. I spent most of the rest of my pregnancy educating myself and trying to prepare myself for the journey that I was about to endure. The day that I went into labor I headed for CMC-Main with the expectations of delivering and possibly not even getting to see my baby because I knew that she was going to be critical. Instead, that night I delivered a beautiful little girl who I did get to spend a few minutes admiring before they took her off for the NICU to stabilize her. I remember looking around in my delivery room and counting almost 26 people awaiting her arrival to stabilize her. That was when I knew that I had a team of doctors and nurses that would make sure that no matter what, she would receive the best care possible.
What was her prognosis when she was born?
Her prognosis was that she was going to have 3 open heart surgeries within her first 3 years of life. One when she was only 7 days old.
How much did you know about HLHS?
By the time that she was born, I was pretty educated on what I was in for. But I didn’t know that by the time she was 3 years old, I would be speaking a whole different language that belongs to heart moms. Your day doesn’t just revolve around going to the park or working a job. It revolves around things like check-ups, chest X-rays, blood work, pushing 16 medications a day, cleaning incision sites, learning to give injections, watching for signs of infection and cyanosis, checking oxygen saturations, weights, and of course loving that sweet child like everyday could be the last. I would say by now I can pretty much explain a single ventricle heart from front to back.
Tell us about Annabelle’s treatment.
At 7 days old she underwent her first of three open heart surgeries. She did very well through this surgery and healed quickly. At about a month old we took her home for the first time where she began to thrive. We were so excited about how well she was doing. However we knew that at about 6 months old she would need her second open heart surgery to keep her heart going. She did well with this surgery at first. I was a little discouraged when she came out of the operating room with her chest still open because I knew that there was some reason that it was left open and that her surgeon didn’t feel comfortable closing it. He told me that as he began to remove her shunt her vitals started to fall so he stopped and was going to try to go back in and remove it when she was stabilized and comfortable. As they got her moved up into the CVICU, her numbers began to climb so he knew that at that point he was ready to remove it and he took the shunt down bedside. She did well for the first few days and was moved up to progressive care to prepare to go home. A few days shy of going home, her amazing cardiologist, Amanda Cook, came to sit down and talk with me. I can always tell by the look on Dr. Cook’s face when she is bearing bad news. She told us that in the last echocardiogram, they had seen a large blood clot inside of Annabelle’s heart which was very dangerous and that we needed to start giving her Lovenox shots to decrease the blood clot in time. We were moved back down to the CVICU where that night, Annabelle began to have several seizures and was rushed off for a CT scan with me with her to hold her down inside of the machine. There is absolutely nothing scarier then holding your baby in your arms as you watch her seize and you know there is nothing you can do to stop that fear you see in her eyes. The CT scan determined that Annabelle had suffered a stroke and that was what was causing the seizures. There was blood found on her brain which was believed to be where the clot had made its way out of her heart, broke off into fragments, and potentially made its way to her brain. Annabelle struggled and we weren’t sure if we would see the day that we would walk out of that hospital with her. But that day did come and she has came such a long way. At age 2 1/2, she went back in for her third operation and of course after the last one I was a nervous wreck. However, she did great and she recovered extremely well. For me it was one of the most amazing things to see a little girl that had just underwent such an extreme surgery get up and stand at her bedside only 4 days post-op. I could not believe how resilient a child can be after going through such big operations.
How is Annabelle doing now?
Annabelle is doing amazing! We still see cardiology frequently, have chest X-rays and blood work, and push about 13 medications a day but we are getting there. This journey has been an amazing one and the strength that she has absolutely amazes me.
Does HLHS affect Annabelle’s day-to-day life now?
Annabelle’s condition is always there in the back of our minds so of course we do worry on a daily basis but she certainly doesn’t let it slow her down. Now that she is 3, she is definitely aware that she has experienced some things. When we watch shows that take place in a hospital operating room, she will say “Look Mom, I have a boo boo too.” She definitely remembers bits and pieces of her hospital stay and she knows that the scar on her chest come from her time in the operating room. But I’m not sure that she is actually aware of what that scar represents.
You’re now a big advocate for other families going through similar situations. Tell us a little bit about your work.
I spend a lot of my time educating not just soon to be heart families on what they are about to go through but also just local people who have no connection to Congenital Heart Defects. I think that it is important to make others aware that kids are born with heart disease and it isn’t just something that happens to elderly people. Until we make the disease more well known, we are never going to receive the funding that we deserve to find a cure for this disease and know the cause. Without that, kids are going to continue to die on a daily basis while fighting this battle. The statistic is that each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood. I have made my way to Capitol Hill when my child was only 3 months old to talk with legislatures and flash around pictures of my child covered in tubes, wires, and hooked to ventilator to force them to provide more money in the budget to fight this disease. I have spoke on several news stations about Annabelle’s story to educate the public. I will continue to fight until the day that I die for a cure for Congenital Heart Defects!
What are some resources to give other parents who are faced with the same diagnoses?
Do NOT scare yourself with going to google and researching defects. Take the time to tour your hospital of choice’s Cardiovascular Intensive Care Unit before your baby is due. Visit local groups like Cardiac Kids, and Mended Little Hearts so you can hear from other heart parents. Reach out to the cardiologist that you choose and also to your surgeon for answers to questions. We had the amazing Benjamin Peeler who is right here in our back yard at Levine Children’s Hospital and he answered every question that I had on Annabelle’s defect. I have never received the run around from him or his team when asking a question even if it was not the answer that I necessarily wanted to hear. I also recommend taking advantage of the wonderful organization that Greg & Kara Olsen have put together called the HEARTest Yard which provides each child diagnoses with HLHS a home health care nurse once discharged from their first surgery.
Switching gears now and moving onto the general “mommy” stuff!
What was your favorite baby gear?
My favorite baby gear was definitely my towel warmer. With Annabelle being a cardiac kid she turns pretty blue when taking her out of the bath tub because she gets so cold. My towel warmer put a stop to that quick!
Weird pregnancy cravings?
I was pretty obsessed with fried pickles which Annabelle now loves also!
Annabelle’s favorite toy?
She is a fan of pretty much anything and everything Minnie Mouse! We recently took a trip to Disney World which was funded by Make-a-Wish Foundation Charlotte so she is still tied up in her stuffed Minnie & Mickey.
Best rainy day activity with a toddler?
Laying around watching Mickey Mouse Clubhouse and playing with play dough.
Favorite place to buy clothes and shoes for Annabelle?
Peaches & Cream Outlet in Burlington, NC
Cutest thing Annabelle has said lately?
Recently she had a little fall outside on the concrete and beat her head up pretty badly. So while shopping through a store a lady asked her about her boo boo. Instantly she reacts by saying “Oh yes I have a boo boo.” Followed by her pulling up her shirt to show her the scar. She seems to forget about the small boo boo’s!
I wish someone told me sooner that…
I wish someone had told me sooner that we would loose so many of Annabelle’s close heart friends throughout our journey. In her short life she has lost 3 heart friends with the same defects as her. Had I known we would loose so many, we would have made more time for play dates. Of course the only someone that would have known that would have been the big man upstairs so sometimes you just have to learn to make time and take advantage of the time that these sweet kids have.
Thank you, Megan, for sharing your beautiful baby girl with us today. You are such an inspiration to all!