‘I can’t imagine my life without my two boys’
BY DENISE LAU
When Sarah Luchenbill learned she was pregnant with twins at 40, she was ecstatic. After losing her husband, she had remarried and the two were overjoyed at the chance to raise children together. But then, at an early ultrasound, Sarah learned something was wrong with one of her boys.
She was sent off for genetic testing and saw a perinatal specialist, Dr. Greigh Hirata, who found a “complete atrioventricular septal defect” or a large opening in the center of the heart where the wall from the top of the heart (atrial septum) and the wall from the bottom of the heart (ventricular septum) would normally meet.
The perinatal specialist also said the baby, named Ezekiel, would probably have Down syndrome. From there, Sarah said, it was one doctor’s appointment after another. She learned her boy would need surgery shortly after birth to fix his heart defect.
Today, five years later, both Sarah’s twin boys — Ezekiel and his brother Elijah — are healthy, growing up quickly, and practically inseparable.
Caring for Ezekiel, Sarah says, has taught her a lot about herself. “For any worried moms out there, keep the faith. Everything will be OK, you’re stronger than you know and hopefully you’ll be blessed with a child as sweet as my Ezekiel.”
Being808: How did you handle knowing something was wrong with one twin and the other seemed fine?
Sarah: Oh I was worried alright, but I had to have faith that he’d be OK to focus on the one thing I had control over — having a healthy pregnancy. I had almost seven months between that early ultrasound and the surgery he’d need to fix his defect, so I poured my energy into eating well and trying to not stress. I prayed a lot. I relied on friends in my congregation who supported me with prayers and encouragement.
It felt like once I let go of the worry I could enjoy being pregnant. My husband and I really wanted these twins, it felt like our last chance to have more children. I have a 21-year-old and now the twins are 5. We had the option of doing an amniocentesis for the twins, but that came with some risk, so we opted not to.
Being808: What advice do you have for other parents told early on their child might have a birth defect?
Sarah: Once you know what your child may have, start writing down questions you have and bring those questions to your visits. Since we were seeing a specialist, Dr. Sim, who is an awesome pediatric cardiologist, we did a lot of research and asked a ton of questions. We felt reassured that our son would be in good hands.
We had the option of staying in Hilo or temporarily moving to Oahu to give birth. I decided to move to Oahu as Kapiolani has a NICU. I stayed with my hubby’s family on Oahu five weeks before my due date. Ezekiel and Elijah were born a little early but everything went well. Ezekiel was monitored for only a day in the NICU and they did an echocardiogram, saw the defect and discharged him to go home. Every two weeks to a month they brought him back to Honolulu to check his condition and we waited for Kapiolani to have Heart Week, or when a pediatric heart surgeon comes from California to do surgeries on Hawaii’s kids. He was seven months old when they did the surgery, taking cartilage from his own skin to sew up the hole in his heart.
Being808: Wow, sounds like tricky surgery. How’d that go?
Sarah: I was glad they used his own skin to fix the hole in his heart. That meant no rejection or revision later. If a device were used, it wouldn’t grow with him like his own tissue does. The graft was absorbed and healed well. We visit Kapiolani once a year to check on his heart. Though the hole is repaired, he still has a little hole there that doesn’t really affect him.
I was crying looking at the hospital photos, remembering how concerned I was. Ezekiel had complications when the surgery happened, we had to stay an extra three weeks in the ICU and another week in a regular ward at the hospital.
It was difficult to have Heart Week come and go and see all the kids leave without incident. It was also agonizing hearing some children in the pediatric ICU pass away from other illnesses. I remember hearing one parent cry so hard realizing her child wasn’t going to live; the doctor had to give her the bad news. I just prayed for her, I felt so bad. It really made me grateful that Ezekiel was OK.
“I can’t imagine my life without my two boys. Ezekiel is so special, he has a real warm and loving spirit and likes to hug everyone. His brother, Elijah, is a better person having Ezekiel to watch out for.”
Being808: What follow-up did you have to do with Ezekiel? Was it also hard to accept his Down syndrome diagnosis?
Sarah: He had to be on a special feeding formula for nourishment as a complication from the heart surgery but he was able to have regular formula later. He’s at the point that they just monitor his heart annually.
The Down syndrome was something that took time to wrap my head around. Every mom wants the best for their child including a bright future, and being healthy.
At first, I had a hard time just saying he had Down syndrome, then I chose to change the way I thought about it, not as a disability but as a condition. I could still provide my son with everything he would need to be successful in life. I just needed to learn about Down syndrome and be his mom, loving him unconditionally. Because he’s a twin, you can’t help but see how different the boys are.
Little things are a big accomplishment for Ezekiel. It took forever for him to say “mom” around when he turned 4. I melt now when I hear him say it! He was crawling around a year, walking at 2 and just recently at 5 is starting to talk more. Every word he learns is a gift, a treasure. I can’t imagine my life without my two boys.
Ezekiel is so special, he has a real warm and loving spirit and likes to hug everyone. If I have a hard day, I’ll come home to his smile and he just makes me laugh. His brother, Elijah, is a better person having Ezekiel to watch out for. Although they are the same age, Elijah acts more like a big brother and holds Ezekiel’s hand a lot and nurtures him.
Being808: Aw, that’s great, he’ll probably be a great dad one day! How did you prepare yourself to raise Ezekiel?
Sarah: It’s better to be prepared. I did my research and got all the help I could right away. When Ezekiel was only a month old, he started physical therapy through Easter Seals. Getting help paid off, he’s doing so well. I researched my pediatric surgeon, finding out where he graduated, what surgeries he had done. I was prepared to fly to the Mainland if we didn’t have a surgeon I could trust.
I just want Ezekiel to have the best life possible so my advice is to arm yourself with knowledge. I learned how Down syndrome could affect his walking, muscle control, that he would be developmentally delayed and that heart defects are common for kids like him.
We found out that he had hypothyroidism and he did take thyroid medication for awhile but was taken off that as it seems OK now. He’s prone to ear infections and colds so we have to monitor him as colds tend to go to his lungs and give him asthma, bronchitis and pneumonia while his brother will just get a cold and be OK. If you’re expecting a child with a defect, call Easter Seals right away. I had a case manager and physical therapist that came out to our home to help.
Being808: Any other pearls of wisdom?
Sarah: Ezekiel is different but we hold him to the same standards as we do Elijah for certain things. If Elijah is to clean up after playing, we expect Ezekiel to do the same. He showers himself because we expect him to. Having expectations, allowing him to strive to do as well as his brother has made Ezekiel try his best to do things other kids do. It may be delayed or not perfect, but he tries. He’s an easy boy, a sweet kid and when he gets mad he’s quick to brush it off. Even his special education teacher says he has a great personality.
Also, surround yourself with a great support system. I have great friends who’ve prayed for our family and been there for me and my faith was strengthened through this experience. My employer was also very accommodating. While I was in Oahu, I worked half-day and then would go to the hospital until he was allowed to go home.
Denise Lau is a content specialist at HMSA and blogs about mommyhood with her #808moms series. She has her hands full with a precocious, artistic daughter and active son. Her goal is to be healthy and fit while her kids become successful, well-rounded adults. Follow her on Twitter.