The Rocky Mountains create the most beautiful backdrop for this heart strong journey. Born and raised in Minnesota, Heather Siegel met her husband Andy and the two settled in Lone Tree, Colorado. Both Heather & Andy work for energy companies in downtown Denver. The two fell in love and next in their plan was to have kids. They had a healthy and beautiful baby girl, Alanna, and shortly after, Heather got pregnant with their second child. Everything was moving along according to plan. The 20 week ultrasound was near perfect; however, as she moved into week 25, the doctors found that the baby was significantly small. They scheduled an ultrasound where the tech looked in depth at the heart and specifically, one of the valves. The doctors concluded that they would monitor for IUGR, a growth restriction, and that one of the heart valves would need to be examined by the high-risk doctors.
As with any of these conclusions, the wait began–it was only Tuesday and they would have to wait until Friday. The suspense was warranted, though, because the doctors found something wrong with the baby’s heart. Children’s Hospital in Denver would give the official diagnosis the following Monday. And until then, as Mamas do, Heather began questioning: What could be wrong? She shared, “We went in on Monday and they informed us that the baby’s condition was called Ebstein’s Anomaly, which is a congenital heart defect of the tricuspid valve. We went into this thinking our baby was totally healthy and now here we are with all these unknowns. The doctor was hopeful that our baby would not need surgery right away, but her heart was also showing signs of dependence on an extra duct in the heart called the PDA, which all fetuses have but closes after birth. Our cardiologist was worried that once it closed after she was born, our baby wouldn’t be able to pump enough blood to her lungs without it. We would have to wait and see.”
Heather and Andy spent the rest of her pregnancy visiting the doctor at minimum 2-4 times a week: Non-stress tests on Tuesday, ultrasound tests on Friday, high-risk doctors, and Children’s Cardiology. They were worried about the heart but also her growth restriction. She had moved from the tenth percentile down to the first, and they had learned that 14% of these IUGR babies don’t make it past 37 weeks. The cardiologists wanted the baby (whom they named Natalie) to grow and stay in as long as possible; but because they didn’t want to take unnecessary risks, the team scheduled an induction for 37 weeks. What seemed routine became a long, drawn out process which ultimately led to the baby’s heart rate dropping and they had to do a c-section. Heather remembered, “That was scary. It turned out the umbilical cord was wrapped around her neck. Once they got her out, they assessed her, quick brought her over to me so I could look at her for a minute, and then whisked her down to the CICU at Children’s.”
A rough four weeks began with staying in the hospital, sleeping in the recliner, and waiting. It turned out Natalie was dependent on this PDA and would eventually need surgery, but she would need to get bigger first. Despite Heather’s attempts, nursing was difficult amidst the cords and fragility of sweet little Natalie, whose weight had dropped down to four lbs. Being this small makes this heart surgery more risky. They decided to wait one more week to let her grow. Heather said, “I was on the verge of breaking down and losing it.“I was pleading with the doctors to try letting her PDA close one more time. To everyone’s surprise, she finally was able to do it on the third and final attempt! We were able to go home. It was a miracle. She was able experience the outdoors for the first time and we were so happy. We knew that surgery would be in our future, but we were finally able to bring our family home.”
Going home, though, was hard. Heather shared, “The surgery just loomed over us. We got in touch with Mayo Clinic in Minnesota, which has one of the best surgeons in the world for Ebstein’s Anomaly. He was sure they could do the the Glenn Procedure–they would take one of the main veins, detach it from the heart, and go directly to the lungs. He thought he might also be able to repair her tricuspid valve, but that Natalie would need to be at least 13 lbs and near 6 months old.” Heather was pumping around the clock and learning how to feed a cardiac baby–they can only eat for 30 minutes at a time because beyond that timeframe they burn more than they take in. With all of these stressors came postpartum depression for this strong Mama. She reflected that she would break down sobbing because of the constant pressure of Natalie’s life being in her hands. She sought medical support and began taking medication to help with the stress and anxiety she felt.
Ultimately, Heather and Andy’s hard work and dedication to help little Natalie grow, paid off. Miraculously, around five months her heart started working better! In turn, she was able to push off surgery until she turned two! They felt fortunate to have made it to this point, but with this came a wave of bad news. Their sweet firstborn, Alanna, had the same heart defect. Both girls have Ebstein’s Anomaly and an ASD, which is a hole between the top two chambers of the heart. This news hit them hard knowing that another surgery would be in their future while Natalie’s surgery was right in front of them.
The family packed up and went to Minnesota and the doctors at Mayo Clinic scheduled her surgery. With this came the anxiety and fears leading up to it. They did all of the pre-op stuff and Heather laughed as she remembered, “Fasting with a two year old is so much fun! We cuddled up the night before and just loved on her. We went in first thing in the morning and of course… surgery was delayed! She was just a little cranky from being so hungry. In turn, I also remember thinking, You know these surgeons are so good at their job, but there is still that small chance that this is the last time I see my child alive. They had to saw open her sternum, stop her heart, put it on bypass, and basically redesign the right side of her heart. Six hours went by and we waited. Andy and I both remember feeling this strange, overwhelming sense of calm, though. We could feel people praying for us and for Natalie.”
The doctors successfully repaired her valve using the Cone Procedure, rerouted the blood flow from her heart to her lungs using the Glenn procedure, and performed a partial ASD closure – made the hole between the top two chambers of her heart smaller. She was only in the hospital for 4 days after the surgery, which Heather remarked, “… was insane! Our long road to this surgery had finally met its end. Natalie was discharged from the hospital and you would never know. That same day of release she was running in the backyard of my parents’ home in Minnesota, jumping on furniture, and scaring me to death—I mean, she just had heart surgery!”
This amazing Mama had a few parting words. “It was hard not having any family in Colorado when we found out all of this information. I was so thankful that the surgery was in Minnesota so we could have support. Long distance support is great, but being near those people just helps so much more. When Alanna has her surgery, we know how many people we have to lean on! I feel like it’s going to be more challenging with her being an older child who is completely aware of what is happening and will have real fears. But we will deal with that when we get there. I’ve seen a lot of families go through so much worse than us. I can’t tell you how many Ebstein families I’m connected to on Facebook who have lost their babies. It’s so heartbreaking, and that’s just Ebstein’s Anomaly. There are so many heart defects that take so many lives. It’s a different world with so many struggles. We really are the lucky ones!”
What a beautiful and encouraging story that shines light into such a heart strong journey! Band of Mamas sends best wishes to any of these cardiac kids and families facing the struggles, procedures, or even surgery in their future.
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