A Mother’s Story

Nine years ago on a beautiful July day, a precious son was born to our family of six. Little did we know what lay ahead, but God’s plans are ever perfect. Five minutes after he was born at Middlefield Care Center, we had a lot of concerned doctors and nurses around our little angel. His oxygen was in the mid 80s and he was very blue.

They called Dr. Tumbush to come take a look at our son. (Thank you, Dr. Tumbush!) He said our baby had a murmur, and he needed medical help, and soon. He was taken by Life Flight ground to University Hospitals Rainbow Babies and Children’s. I got to hold him for just 15 minutes before they put him into an incubator with wires, tubes, etc.

What a shock. Everything was normal one minute, and the next we didn’t know what was going to happen. My husband went with our precious son, and I had to stay behind. He called me 45 minutes later to say that we almost lost him twice on the way to the hospital.

The doctors gave us very little hope that our baby would be okay, but they wanted to keep trying. At two days old, he had surgery. As parents, it was hard for us to grasp. Babies are so fragile – how could they do surgery on a two day old? But our surgeon was very caring and understanding, which made it easier. Everything was in God’s hands. We had to try and leave it there. It was God’s will, not ours.

We were told our son had PAIVS (pulmonary atresia with intact ventricular septum). His whole right side had a lot of abnormal valves. Only God knew what the outcome would be. We had many unsure days in CTICU. One day, my sister was holding our precious son. I had just stepped out of the room when I saw my aunt come running out the door to say that my son had stopped breathing. Oh the sinking feeling. That was only one of many episodes he had. We had to take CPR classes before we were allowed to bring our son home.

We spent two weeks in ICU and more in the step-down unit. Then came the homecoming, the excitement, and the unsure feelings. But God was with us. We monitored our son hourly, measured his blood oxygen levels, and did daily weight checks.

We had many ups and downs. There were medical appointments weekly, and sometimes twice weekly. Our son kept getting worse. At nine months old, he had open heart surgery. “Cast your fears on Jesus, He will help you through,” we thought. He spent many days in the hospital in his first two years, but then an amazing thing happened.

We had been taking our son to DDC Clinic for his blood work. Could we do GAP testing to see if there was something genetic? A few days later, we had an appointment. Would they find something? Our hearts were heavy, but we needed to trust. Six weeks later, we learned DDC Clinic found nothing to cause all this. Thankfully, they were not giving up.

They suggested a bigger test – the last thing we could do. My husband, son and I got tested. After six weeks, DDC Clinic called.“We found something. Can you come in?” I’ll never forget that day, and I am sure there are many mothers who know what I mean. I wanted to know, yet I didn’t. It didn’t make sense, but after seeing my son go through surgery over and over, it was so very hard. Our son had three major cath lab visits, 10 regular cath lab visits, and one open heart surgery.

That day at DDC Clinic we got the shocking news. My husband and son have a very rare genetic defect that the clinic had never seen. We didn’t know what was going to happen. I was numb. But after hours of research, they had information for us, and we finally had answers.

The mountain looked so steep, but DDC Clinic went above and beyond. They set us up with heart doctors who specialize in genetics. They were amazing and did everything to help us in any way possible. It was suggested that we test our other children, and I thought, NO! But we did additional testing, and our youngest daughter tested positive. I felt so overwhelmed. It was hard to accept that this was the road we would be traveling on.

Our daughter has a lot of issues due to her genetic condition, but there is a reason for everything. As a mother, every day with my angels is a blessing from God. My biggest question is, if we would’ve known nine years ago, what could we have done differently? But then, I thank God we have DDC Clinic and a caring staff to help us no matter what comes our way.

Rainbow Babies and Children’s hospital told us that most babies pass away before doctors realize they have PAIVS. They said thank God we had Dr Tumbush.

Dr Tumbush, you will always have a special place in our hearts. We miss you, but we’re very thankful that you are now at DDC Clinic. It makes it even more special to us.

DDC Clinic, keep doing what you are doing. The community needs you! I’m sure it’s not always easy but if we stand together, all things are possible.

Something I would do differently is to not wait to get genetic testing! The sooner the better. If you have questions or concerns, DDC Clinic is just a phone call away, and they are all very caring and supportive. Thank you all!

Our son loves DDC Clinic. He doesn’t talk much, but he has a smile to share with everyone he meets, and he doesn’t give up. Our daughter is more shy in crowds, but they are both a ray of sunshine. I tell myself I need them and their smiles, and that’s why God put them in my hands. So let’s all keep on keeping on. God will always be with us.

– A grateful mother and her seven blessings

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