Expecting and Raising a Baby With a Birth Defect
January 30, 2017
When I was 20 weeks pregnant and went in for my anatomy scan, I thought my boyfriend, Matt (who’s now my husband), and I would just be finding out the baby’s gender. We did find out the baby was a boy, and I was thrilled. Then the technician who was doing the ultrasound told me it looked like there might be something wrong with his left kidney — that it might have some cysts in it.
We were told that it was pretty common, but I needed to come back in two weeks to be sure the cysts went away. They didn’t. So then, after an ultrasound with a perinatologist and an MRI, we received the bad news that my son was missing his right kidney and his left one was filled with cysts. We didn’t know how long it would function. We were told our baby would have to go to the NICU at birth — as a precaution — and that he would need some tests done and might need a minor surgery. But he wouldn’t be in the NICU long.
Pregnant and worried
For the remainder of my pregnancy, I worried about the health of my unborn child. I was trying my best to stay calm, but my pregnancy just got worse and worse. I started to swell, my blood pressure started to rise, I started having more and more protein in my urine, and my amniotic fluid level was rising above normal limits.
Finally, the perinatologist decided at 33 weeks to take some amniotic fluid out so that I could breathe a little easier. The color of the fluid showed that my baby had been throwing up. The doctor said that it was an abnormal finding for a baby with just a kidney problem, but no one gave it much thought — no one other than me. I felt like a failure as a mother to know that my baby was already sick and he hadn’t even been born yet. A baby is supposed to be safest with his mother, and mine wasn’t.
Prepping for the NICU
When we found out our baby (Nathan!) might need surgery, my OB told us we should meet with the surgeon while I was still pregnant. That way, we could ask questions in advance and know who was operating on our child. We also met the pediatric urologist; we knew he would need to be involved since it was a kidney problem. It made us feel better to get prepared for the birth of our special little boy.
The last meeting we arranged was with the NICU team so we’d get an idea of where our baby would be going and what we’d see there. It was terrifying to walk into the NICU — where the really sick babies go. I wasn’t ready. Add in raging pregnancy hormones and I’m not sure how Matt handled me! We toured the NICU with a neonatologist, and she gave us some advice that I will always remember: She told us to bring a blanket. She said the nurses would use the blanket to pad Nathan’s bed and then he would have something of his own, and it might make us feel more comfortable.
While packing my bags for the hospital, I made sure I had a blanket for the NICU. I checked the bag each day to be sure it was still in there. I _needed _to have that blanket for him. It felt like the only thing I could give my child after his birth, and it was never going to be enough.
My blood pressure had been getting higher and higher, and my OB decided it was time to put me in the hospital on strict bed rest. I spent five days in the hospital and had many visitors. My mom and Matt rarely left my side. They took turns staying overnight with me.
The night before my c-section, my mom sent Matt home to get a good night’s sleep. The next morning, I was in a panic — I was worried about how my hair looked. Now I can look back and see that my hair was the only thing I had any control over that day. I was stressed and it was showing. Terror doesn’t begin to describe how I felt that morning. My dad arrived, then Matt and, finally, his parents. Looks of doom and fear were on all their faces, but they were all trying to keep me upbeat.
In the operating room, I remember there being silence. Then my OB said, “His head is out,” and a few minutes later, I heard Nathan cry. My beautiful, sweet boy had made it into this world. The OB held him up over the curtain so I could see him, and he was amazing. He was my baby, and no health problem was going to change that.
They wrapped him up, and the doctor brought him over to me. She told me to give him a kiss. Then, she said he was having a lot more trouble breathing than they had anticipated, so they were going to take him away immediately.
After Nathan was examined — about an hour after birth — Matt was able to go see him in the NICU. A doctor came to my recovery room and told me, “He’s stable,” and that relaxed me a little. Then he used words that I was sure he was making up, since I had no idea what they meant. He told me Nathan had a tracheoesophageal fistula, one kidney, esophageal atresia, and then he said VATER association, which is an acronym for a group of related birth defects that all happen together, which included those three problems.
The nurses in the recovery room immediately brought me tissues. I will forever be grateful to the very kind nurses who held my hand and wiped away my tears while I laid in the recovery room reeling from all this new information.
Nathan: Pure perfection
I wasn’t allowed out of bed right away, so my family went to the NICU and got to see Nathan before I did. I heard from them that he was having trouble breathing, and that worried me.
Finally, later that day, I convinced a nurse that it was a good idea for me to get up and go to the NICU. Matt wheeled me there in a wheelchair. When we got into the NICU, everyone knew Matt. He had been in and out all day. As soon as Matt opened the door, he pointed Nathan out to me.
Nathan was beautiful: 7 pounds and 7 ounces of pure perfection. Of course, his insides were anything but perfect, but on the outside, he was amazing. I wanted to pick him up and cuddle him. I asked the nurse if I could, and she said no. She said he was too medically unstable to be held.
I felt like a complete failure. I’d thought I must have done something to cause his birth defect, and now I wasn’t even allowed to hold him. I had a hard time staying in the NICU without being able to hold him.
I went back to the room and tried to rest. Our family came and went all day. We were never alone, and that was a good thing. I needed distraction. That night, when Matt said we should go to the NICU to say good night to Nathan, I agreed.
We went back into the NICU, and there was a new nurse taking care of Nathan. She asked me if I wanted to change his diaper. Matt videotaped my first diaper change. I was so scared — he looked so fragile with all the equipment hooked up to him and I didn’t want to hurt him. The nurse assured me that it was okay. It took me about 10 minutes to change one diaper, but I did it. Then she asked if we wanted to hold him. Of course we wanted to hold him!
I have never been so overwhelmed with so many different emotions in my life. I was happy, sad, scared and angry all at the same time. Nathan looked so small in my arms. He looked peaceful; he was sleeping. I then passed him to Matt, who also wanted a turn. That very kind nurse took our first family picture, sitting in the NICU.
Coming to grips with the birth defect
I never imagined a birth defect could happen to me. I was a good person; I went to school; I got good grades. I was in nursing school preparing for a good career. But I learned that it happens to thousands of people just like me each year and really can happen to anyone, sometimes for no reason. I’ve also learned that birth defects aren’t something you should avoid talking about.
I think as soon as any woman gets pregnant, she flashes forward to the moment her perfect little baby is born. I had that dream taken away from me, and I had to grieve my loss of a perfect pregnancy. I will never get my first pregnancy back, and I will never again be the same naive girl who simply thought all babies are born at 40 weeks and in perfect health.
Nathan was in the NICU for 17 weeks while the team worked to stretch his esophagus. That took a lot longer than anyone expected it to. Then he had a few surgical complications and ended up needing a tracheostomy (surgery to create a breathing hole in his neck) at four months old. So his health has been fragile. He gets sick very easily. He still has a G-tube (a feeding tube in his tummy), which was initially placed in his first surgery when he was less than 24 hours old. He’s spent a lot of time in the hospital with respiratory illnesses because his lungs are weak from all the surgeries and intubations he’s had. He will always be a medically fragile, chronically sick kid.
The biggest obstacle Nathan faced initially was his breathing. During the repair of Nathan’s esophagus, his vocal cords were paralyzed in the closed position. This prevented him from breathing on his own — that’s why he needed the tracheostomy. We weren’t sure if his vocal cords had been cut or just damaged, so we needed to wait to see if their function would come back.
Since he was born, Nathan has had 13 surgeries and procedures done total. He’s had a few vocal cord surgeries and feeding tube surgeries and revisions done. He’s also had a few emergency surgeries done as complications arose from other things. For a long time, we were frequently making three-hours-each-way trips to get Nathan what we saw as the best medical care possible.
A happy baby
Nathan is amazing. When he was first born, we were told to expect a cranky, whiny, needy baby, but he was anything but. He’s always been easygoing and a lover of sleep.
As long as someone was holding him, he was good. He didn’t cry often, even right after surgery. He was always easy to please — an easy baby.
My second pregnancy
Before we made the decision to even start trying to have another baby we met with a geneticist. The geneticist told us that our chances of having another baby with a birth defect were slightly higher than the average person, but still low. With that, we moved forward with expanding our family. We needed a healthy baby this time. We needed a happy ending.
We found out we were expecting again shortly after we started trying. As soon as the pregnancy test showed two pink lines, I panicked. It brought up a lot of emotions and feelings from my pregnancy with Nathan. And now there was the possibility of another baby with a birth defect.
I felt like I was holding my breath for the first 20 weeks. I once called the doctor’s office because I didn’t “feel pregnant” — I’m sure they thought I was insane. I dreaded my anatomy scan. I cried going into the appointment — I was terrified.
During the anatomy scan, we found out it was another boy, and there were no visible problems with his kidneys. I thought that would make me feel better, but it didn’t. With Nathan, we’d only known about the kidney problem during my pregnancy, and we had no idea of the extent of his birth defect. In the back of my mind, I knew this baby could be sick and we wouldn’t know it yet.
Eventually, my blood pressure started going up again, and I earned myself weekly nonstress tests. During my first one, the baby’s heart was skipping beats and I was told to see a fetal cardiologist. I didn’t even make it to my car before I broke down. What I thought would be my “healing pregnancy” wasn’t going as planned, and I desperately needed it to. I called my husband and cried. He calmed me down and we decided that no matter what happened, we would get through it.
The following week, we found out that our baby was fine; it looked like he had a heart murmur. But we had no reason to worry — easier said than done for NICU parents.
Delivery day came and I had a second c-section. When they delivered our second son, Trevor, he was perfect. He was my “healing baby,” and I couldn’t have been happier. Physically, my second pregnancy was easier, but emotionally, it was harder. I no longer had naive ideas about what was going to happen. I knew what could go wrong; I had _lived _what could go wrong. I had met other moms who had experienced the worst possible outcomes of pregnancy, and it had scared me.
Now we’re getting ready to have a third baby, and I think I’m prepared for how I’m going to feel. Emotionally, I know what’s coming, and I don’t think I’ll worry as much. Truth is, I know I’m going to worry. I’m a mom and worrying is my job.
Life at our home
Nathan is now five, and Trevor is two. They get along like typical brothers. Nathan likes to tell on Trevor, and Trevor likes to antagonize Nathan. They love each other and are best friends, but they also drive each other crazy. They both love _Cars _and Thomas the Tank Engine. They love to play together, and each time Nathan is in the hospital, he tells me he misses Trevor. I think Trevor feels the same way, but he isn’t old enough to be able to express it yet.
Nathan is always happy, even when he’s in the hospital. He doesn’t let anything get in his way of having fun. As soon as a procedure is over, he wants to go right back to playing, coloring and reading books. He’s strong and brave, but he still needs his mom around when doing anything medical.
He loves to run around with his brother but gets tired easily since he doesn’t have great lung capacity for endurance activities. He likes to splash in the water during the summer but is still learning to swim. Many times he’s scared to try new things, like T-ball, but then he’ll tell me he had fun doing them.
Nathan loves the color red. He loves to wear his pajamas all day. In most ways, he is like any other five-year-old.
But Nathan knows we’re going to the hospital based on the route we take in the car. He knows that the hospital means an IV, and as we near the hospital, he’ll start to tell me he doesn’t want an IV in his hand and that he doesn’t want anything near his nose.
So in many ways he’s like any other five-year-old, but in many ways he’s wise beyond his years. He’s gone through a lot and had to grow up quickly. He’s had to learn to adapt. He knows how and when to call his nurse when he’s in the hospital, and he loves a hospital bed because he’s able to move it around.
Very slowly over the years, the visits to out-of-town doctors have slowed down. We’re able to go longer and longer in between hospital stays, but Nathan is still in the hospital a lot. He misses a lot of school for doctors’ appointments and illness. We used to be in the hospital at least once a month. Now it’s once every few months. For us, that’s progress.
My hopes for Nathan
I hope Nathan will be happy. More than anything, I want him to have friends, a good job, a great life. I don’t think those hopes are different from any other parents’ hopes for their kids.
I also want Nathan to be healthy for a long time. I want to go one full year without seeing the inside of a hospital. I want him to be able to lead a normal life. I want strangers to look at him and not know his history, not assume that there is “something wrong” with him.
I think Nathan’s breathing will always be his biggest obstacle. He struggles to maintain his respiratory status now. He doesn’t have much stamina and can’t run around like all the other kids. For now, he can keep up with his two-year-old brother, but that won’t last for long.
His eating is also a struggle. We want to get rid of his feeding tube, but he needs to learn to eat by mouth first. We just spent a month in New Jersey at a feeding clinic teaching him how to eat. He graduated from that program eating 25 percent by mouth, which was amazing, but I want more. I want 100 percent, and I’m not going to stop until we get it. I know Nathan can do it — we just need to practice. I’ll throw a party once he’s able to have his feeding tube removed and, for the first time in his life, will be medical-device-free.
Things I wish everyone knew about birth defects
I think all parents should know that birth defects can happen to anyone. It’s not always the parents’ fault, so don’t ask, “What caused this?”
I also wish I could tell everyone how amazingly strong and brave my little boy is. He has taught me so much more about love and patience than I ever imagined. I knew I would learn a lot being a parent, but I never imagined I would learn this much. I wish people knew that Nathan just wants to be treated like any other kid. He doesn’t want to be treated like he’s sick — even though accommodations do need to be made for him. I wish people could see that underneath all the scars and fears is a typical five-year-old boy who loves life.
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