Sara's Story: Fragile Infant Survives Life-Threatening Condition

Sara Nelson: I've always loved kids and I felt like if you're going to make a change in the world you have to start with the kids.

Justin Nelson: We were given a very, very low chance of having children naturally. So that was very hard to hear and to take. So then we went with the fertility route and we were blessed with our first little girl. She went full term. 41 weeks, 8 pounds, 13 ounces. Then we always wanted a large family, so we tried for number two and we became pregnant and not shortly after the pregnancy we started to figure out some of the numbers were a little off-kilter. We knew something was different with this pregnancy.

Sara: We depleted our savings to have our family, and about five months in, when you take the alfa feta protein test, I failed it by a lot.

Dr. McKenna: The alpha fetoprotein test is a screening test that's done to screen for open neural tube defects such as spina bifida, so all women are offered that as part of routine prenatal care. Her general or routine OB-GYN or Midwife would have ordered that test.

Sara: Then we went to the ultrasound and found out that Evelyn was perfect. She is fine. She is still a girl and they found the tumor. At that point, it was very small and the tumor was causing me to fail the alfa feta protein test.

Justin: Everyone's excited when they become pregnant and starting a family, or adding to a family. No one wants to have any issues, they want it to be a smooth pregnancy, go full term, have a healthy baby. And for us to go through that is just very difficult. So we tried to be there and just support each other the best we could.

But when we started having these issues and complications, we were put directly under Dr. McKenna's care and the best facility was the Miami Valley Hospital. They had the best doctors and nurses and NICU facility to our knowledge and recollection. So we were put in his care and that's what he recommended and he was with us during the entire process.

Sara: We go back and for the first time we met Dr. McKenna. It was the second time I was there. He knew more about the tumor than anyone else that we had talked to. He assured us that he would do everything that he could to make sure that we were okay. We was a little concerned about how large I was. I looked a couple months larger than I should have been and I felt like I was a couple months larger. He kind of just explained that he would continue to monitor. He thought four weeks was a little too long because the tumor had grown. Evelyn was still looking okay but he wanted to move the appointments to every two weeks so that if she was in distress he could catch it and we could move forward.

Dr. McKenna: The biggest problem we run into with a lot of our complicated pregnancies is prematurity because if we have a problem in utero delivery is always an option but it may not be a good option because of prematurity. That's kind of the way we approached things with Sara. I know if we could get her out to 30 weeks or beyond that the outcome would be much better and with the tumor of this size, which eventually made the baby anemic, we didn't think that we would be able to get her to full term so we had to look at ways that we could extend the pregnancy just to a point where we could hand the baby off to our neonatology colleagues and they could take over the care.

Evelyn's initial blood count was quite low. It was about 5 and I would expect it to be around 14 or so in a baby at that gestational age. What that meant was that her blood count was less than half of what it should have been. We subsequently found a good reason for that but at the time we had to give her blood because if we didn't her heart would start to fail and she would most likely expire from the anemia.

This is the first time where I've had to treat a mom with a chorioangioma with an intrauterine transfusion but I was aware of the possibility, but what made this, what facilitated our care of Sara was that we have experience treating fetal anemia from other causes, and we do that quite frequently, so we felt very comfortable when the baby became anemic we could treat that. We couldn't fix the underlying cause, which was the blood leaking across into Sara's circulation but we could at least give enough blood to temporize things so that Evelyn didn't continue to go into heart failure.

Sara: It never felt like I wasn’t where I was supposed to be, if I had to be in this situation. You know, I had the best doctors at my side, I had wonderful nurses, I had strong family support. The situations was just unfair.

They held her up and she was so sick she couldn't cry. She looked like a normal baby but her eyes were closed. She didn't make any noises.

Dr. McKenna: You know we've got a really good NICU team here and for a 30-week baby not to cry I don't get too worried about that. I knew they were going to take good care of her and that we were going to hear crying soon.

Sara: I've never felt so helpless in my life. At least when she was in my belly I felt like in some way I was protecting her. She was with me. I could control something even though you really can't. That's how I felt. Now, I was leaving my most precious gift in the hands of strangers really. I hadn't gotten to know the nurses in the NICU like I had known Dr. McKenna. I know that he had put so much faith and trust in them, so I was trusting them through him and the people at his practice.

Justin: Faith. Faith. We just prayed, we had a lot of family praying. We just never gave up, our doctors never gave up. They were very honest with us. We tried different measures, and they would say we want to use this medication and then this is what it's supposed to do, and sometimes it worked and other times it didn't. But Evelyn just kept getting better each and every day.

Sara: She's happy. She's healthy. She's here. She wouldn't be here if it wasn't for Dr. McKenna and his team. They made everything look easy and I know it wasn’t.

Justin: The blessing is just that Evelyn's here with us. That she survived, that she made it through this entire experience, basically unscathed. All the issues she had when she was born she was able to overcome and persevere and fight through. She's doing very, very well. We still have doctor's appointments and we still have future check ups, but overall her health is doing very well and it's just a miracle that she's here and it's great to have our family together and watch our children grow and enjoy our lives.

They saved our daughter's life. Miami Valley Hospital definitely saved Evelyn's life. Again there are no words that we could ever say to thank every single doctor, nurse, everyone we went through from beginning to end.

Sara: Evelyn's journey was one of the darkest times in my entire life but it made me a better person. It made me a better mom and I don't know why I was chosen to be her mom but I am so thankful that I am.

and I don't know why I was chosen to be her mom but I am so thankful that I am.