One family's story: our unborn baby's birth defect

by Boston Children's Hospital staff on March 24, 2010

by Shane, Meegan, Talon and Tristian Perkins

Perkins jpegA little better than a year ago, Shane and I and our 1-year-old son were excited to find out that we were going to have another child. But when we got to our 20 week ultrasound on a Friday in September of 2008, my husband and I were told the words you never want to hear when you are pregnant: “There is a problem with the baby.” We were shown spots of fluid in the baby’s left lung and were told that it most likely was a CCAM (congenital cystic adenomatoid malformation), an abnormal growth of lung tissue that prevents the normal growth of the lungs.

Our world stood still and all we could think to ask was, “What did I do wrong and why did this happen?” We were assured that it was nothing that we did and that was there anything we could have done to prevent this. We had thousands of questions that needed immediate answers. We were told the soonest we could be seen was on Monday with a specialist in Manchester, New Hampshire. This was the longest weekend of our lives. With support from our family and friends, we knew all we could do until Monday was wait and pray.

Further tests confirmed that it was a CCAM. We had a lot of our questions answered and decided that terminating the pregnancy was totally out of the question. This was our child and we were going to fight for this baby with everything possible. The doctor felt strongly that we could fight this, but made no guarantees and described the long road ahead. We were ready and willing to fight; we would do whatever it took.

Testing showed that the CCAM was very large and it was pushing on the baby’s diaphragm and causing the baby’s heart to be pushed to the right side of its body. So not only did we have to focus on the CCAM growth, but we had to watch for hydrops (life-threatening problem of severe swelling in the fetus and newborn), heart failure and pre-term labor.

It was determined that all care would be done at Children’s Hospital Boston at the AFCC (Advanced Fetal Care Center). The first appointment consisted of an MRI to see the size of the CCAM, then we had to have an echocardiogram of the baby’s heart, then an ultra sound and finally to meet with the surgeon Dr. Russell Jennings. This was a very long day, but we received a lot of information. The diagnosis showed that the CCAM consisted of cysts (fluid-filled sacs) and was very large. There was also a sequestration – abnormal connection to a main blood vessel that was feeding the growth. There were no guarantees that the baby would survive this, but the doctor was willing to do everything he could. We felt very comfortable and confident that we were in the right place and our son was getting the best care possible. None of our questions were left unanswered.

Each visit was a relief to hear that the CCAM had not continued to grow and there were no signs of hydrops or heart failure. Other cases had shown that the CCAM would stop growing at 28 weeks, so each day that we made it through was one day closer to the 28 week mark.

The day that we were told the CCAM was growing again and the baby was just below the point of heart failure was devastating. Again, we pulled it together and with the support of our families we moved forward. We were given the option for me to have a shot of steroids that in the past had stopped the growth of the CCAM for a period of time and would help the baby. At 24 weeks, I got my first shot of steroids. The next two weeks showed that the CCAM had stopped growing, an answer to all the prayers. The steroids did exactly what they were suppose to do.

At 26 weeks, I had one more shot of steroids. They stopped the growth of the CCAM once again and our baby made it to 28 weeks. It was at this point, that they predicted the CCAM would stop growing—and it did.

I continued the trips to Manchester, New Hampshire and Boston until the 34 week mark. Then I had another MRI at Children’s that showed the CCAM was still very large, but the baby was outgrowing it and I could now transfer my visits to Beth Israel Deaconess Medical Center in Boston. Although things had turned around dramatically, we still knew there was a chance the baby would need surgery at birth and we were prepared. Each day and each struggle strengthened not only our hope but our commitment to our child. By now, we knew that he was a boy, and that he was going to make it.

Tristian 9lbs 2oz 1-22-09With the skilled care of our team of doctors and nurses ready in case any problems came up, thousands of prayers, and a child that was determined to take his place in our family, Tristian Shane Perkins came into this world on January 22, 2009 weighing in at 9 lbs., 2 oz.

He was monitored the rest of the night in the NICU and was able to come to our room the following morning. Tritsian was doing absolutely fantastic and we got to take him home to New Hampshire two days later. We just couldn’t believe that he was so healthy and strong and we got to take him home so soon.

Tristian had an appointment with Dr. Jennings in July of 2009 and was scheduled for surgery September 3, 2009. During this operation, Dr. Jennings would remove the mass from Tristian’s lung. Leaving the mass in place would pose a risk of infection. Also, having surgery at such a young age would allow new lung tissue to grow in the space left by the mass, so there was no question in our minds that this surgery needed to be done.

We were nervous and anxious to get the surgery over with. The idea of him going under anesthesia and having surgery at the age of 7 months was  scary, but deep down we knew he would be okay. If he could make it through all of the obstacles so far, he could make it through this. Having surgery at such a young age would also allow new lung tissue to grow to replace the mass that was being removed, so there was no question in our minds that this surgery needed to be done.

The day of surgery was the longest day of our lives. The hardest part was to give him up to the doctors and watch them walk away knowing we could not be in the room to comfort him. I knew he was in the best hands and they told me as they took him away, “Don’t worry, we will take very good care of him.” I trusted them. Tristian was in surgery for five hours and every hour a nurse updated us on his condition. Two days later we got to take him home.

We hope that our story has helped anyone reading it know that if you’re facing a challenge in your pregnancy or if your ultrasound shows some problems, think of Tristian (and all the other babies and families) and all he went through. Have faith in the doctors and yourself and your families. Most of all, know that babies are a miracle from the beginning to end and miracles happen every day, you just have to have faith.

Tristian 1 year oldTristian just turned 1 on January 22, and is a happy and healthy little boy. How far we have come is nothing short of amazing.

We want to thank the Advanced Fetal Care Center team, Dr. Jennings and the surgery team, Dr. Johnson at Dartmouth Hitchcock in Manchester, New Hampshire, and Dr. Lim and his team at Beth Israel for the time they spent with us to make sure we had the best care we could possibly have during pregnancy and for a safe delivery. Of course we also want to thank our family and friends for their support and prayers. We could never have done it without you and Tristian is here and healthy because of all of you.

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4 comments

  • Sandra

    Thank you so very much for sharing this story. Today, my daughter who is due the first of Sept. was told that the regular ultra sound + a 3-D ultra sound showed a black spot appearing to be in the lung area. She goes for another ultra sound next week by someone else, to be for sure.
    We of course are scared, but as you had, we have a heavenly father that we trust in and by faith walk with.
    Sandra

  • Donna

    Thank you so much for sharing this. We were told just a couple of days ago that our baby has a mass on his/her right lung. It has been a scary couple of days to say the least. We will be going in for a full evaluation next week. It gives us hope to hear of Tristan’s story. We hope to one day be a positive inspiration to others as you have been to us. Thank you again.

  • Donna

    Thank you so much for sharing your story. We were told at our 20 week ultrasound (just a couple of days ago) that our baby has a mass on his/her right lung. This has been a scary couple of days to say the least. Hearing stories like Tristan’s gives us hope. We go in for a full evaluation this week. We hope to one day be a positive inspiration to others as you have been to us. Thank you again.

  • Donna

    For some reason, my comment didn’t show up the two times that I tried, so I am going to try replying to this message instead.

    Thank you so much for posting this story. We were told this past week, at our 20 week ultrasound, that our baby has a mass on his/her right lung. It has been a very scary couple of days, with a lot of worrying about all the “what ifs.” We are inspired by Tristan’s story and we are optimistic. Our full evaluation is scheduled for this Thursday. The waiting is the hardest part. We hope to one day be a positive inspiration to others just as you have been for us. It gives us hope…and that’s what we need right now. Thank you again.

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