Charlie is both a miracle and spectacularly ordinary. At 24 weeks gestation, St. Louis Fetal Care Institute surgeons used fetoscopic surgery, with a laser, to remove an amniotic band wrapped around his right leg in the womb.
To anyone who does not know that Charlie had fetoscopic surgery, he seems perfectly ordinary. Though he was born with a small area of numbness in his foot caused by the amniotic band, it improved on it’s own and with a little help he was on his way to a healthy infancy. He is now growing and playing, walking, and developing well. His mother says, “No doubt Charlie will be walking, running and playing like any other boy.”
Spina bifida is the second most common birth defect and affects about one out of every 1,000 pregnancies. It happens when the bones around the spinal cord do not close, leaving it open and exposed. During the pregnancy, the spinal cord is further damaged due to exposure. Lower leg function and brain development are permanently altered.
A few months ago, the results of a nine-year Management of Myelomeningocele (MOMS) Trial were released. The results showed that babies who have myelomeningocele and have fetal surgery before birth are more likely to walk and experience fewer long-term brain problems.
The results of this trial opened a new option for parents facing a myelomeningocele diagnosis. One of the
St. Louis Fetal Care Institute patients chose to take this option last week.
The patient was a little more than six months into her pregnancy when the team performed fetal surgery on her little boy while he was still in the womb. During the surgery the team closed the spinal cord opening and restored the muscle, skin and tissue covering the spine. The surgery will also help prevent the baby from developing hydrocephalus, a condition where too much fluid builds up in the brain.
Fetal surgeon Dr. Edmund Yang, neurosurgeon Dr. Kurt Eichholz and Maternal-Fetal Medicine specialist Dr. Mike Vlastos performed the procedure. Dr. Yang has years of experience performing the surgery from when he was the principal investigator of the MOMS Trial at Vanderbilt University. Dr. Eichholz, an expert on minimally invasive spinal surgery, also worked with the MOMS team at Vanderbilt. Drs. Yang, Vlastos and Eichholz are also all professors at the Saint Louis University School of Medicine.
The patient, who lives a few hours away from the St. Louis Fetal Care Institute at SSM Cardinal Glennon Children’s Medical Center, stayed in the hospital for four days following the surgery for monitoring. She will remain in St. Louis for two weeks so the progress of her baby boy can be monitored. If everything remains complication-free, she will go home and then return to St. Louis to deliver her baby via c-section at SSM St. Mary’s Health Center.
As the only fetal care center in the Midwest with a broad range of experience in this groundbreaking treatment for spina bifida, the team at the St. Louis Fetal Care Institute is here to help parents make the best decision for their baby and family. We are available 24 hours a day, seven days a week to answer questions. Just call (877) SSM-FETL (877-776-3385), visit us at facebook.com/fetaldocs or e-mail us.
Last year, Lindsay gave birth to baby Karlie who was diagnosed with CDH (congenital diaphragmatic hernia) before she was born. She sat down to chat with us about their journey.
1. How did you find out that your baby had CDH?
It was my routine 34 week ultrasound when my doctor noticed that something was wrong. Within two days I was at SSM St. Mary’s Health Center seeing Dr. Erol Amon, who confirmed the CDH diagnosis.
2. What was your first reaction when you found out?
Our first reaction was that we were scared we were going to lose another child. We lost our first daughter nearly five years ago. We were hopeless and devastated.
3. How did you end up at the St. Louis Fetal Care Institute?
Dr. Amon set up an appointment for us to meet the with Dr. Yang, Dr. Vlastos and the FCI team to discuss what was happening and to have further tests done.
4. What was your course of treatment?
Since my pregnancy was so far along, our course of treatment was to have routine ultrasound and other tests. Otherwise there was not anything else to do until after our daughter was born.
5. What did you find most helpful through your journey?
What we found most helpful through our journey was to have all the information we could. We also found having hope and praying helped us. We have a great support system through our family and friends. It also helped the staff of the St. Louis Fetal Care Institute was always available if we had any questions or needed anything.
6. Tell us about the birth of the baby?
At 39.5 weeks pregnant we went into St. Mary’s to be induced. We expected the induction would not take long since it didn’t with my other two inductions. I wasn’t progressing very well so it took longer. Finally, on Thursday morning, May 13, 2010 after starting the induction on the evening of May 10, it was time for Karlie to come into the world. I was taken into the operating room to deliver since that room was large enough to handle the team of doctors from St. Mary’s and SSM Cardinal Glennon Children’s Medical Center.
I pushed for 30 to 40 minutes and then Karlie was finally here. It was very scary because at that moment we were not sure if our daughter would survive. The team that worked on her did an awesome job to get Karlie stable enough to be transferred to Cardinal Glennon. Dr. Hall even rode with Karlie in the ambulance to Cardinal Glennon to help in case Karlie needed it.
7. Tell us about baby Karlie’s journey after she was born?
Karlie weighed 8 lbs. 14 oz. and was 21 1/4 in. long at birth. Within five hours of her birth she was in surgery for ECMO, repairing the hernia and getting a feeding tube placed. She did very well in surgery and everyone continued to be impressed how she improved throughout the days.
She was only on ECMO for eight days, and the ventilator for 15 days. She spent seven weeks in the neonatal intensive care unit (NICU) and was able to come home free of any monitors or oxygen on June 21, 2010.
8. How is Karlie doing now?
Karlie weight 21 lbs. 4 oz. and she is a very calm, relaxed little girl. She is a happy baby and doing good. Even though she is having difficulties eating by mouth, we are truly blessed that this is the only real problem she is having.
9. What did you learn from this experience?
We learned that anything is possible. Being through a loss previously of our first daughter, we knew of the bad that could happen. We are truly blessed to have our daughter Karlie here with us. We thank everyone that cared for Karlie from the bottom of our hearts. Everyone at FCI is the greatest!
Janna and Paul are expecting their second child on April 19. This is the story of their CDH pregnancy journey.
1. How did you find out your baby had CDH?
Janna:
We went to our regular 17 ½ week ultrasound on a Monday. I could tell by the way the sonographer was acting that something was wrong, but she couldn’t give us any more information, besides to tell us we would have results in a week.
The next day the phone rang, it was my doctor’s office telling me they needed to see me that day. At the office they told me they saw something called a “gastric bubble.” I immediately went home and got online trying to learn more about was wrong. They scheduled me for a Level II ultrasound that Friday. We knew something serious was wrong, we just didn’t have a definite answer as to what it was.
2. What were your reactions to the CDH diagnosis?
Janna:
It was nerve wracking knowing something was wrong. We were immediately referred to the St. Louis Fetal Care Institute (FCI) and made an appointment as soon as we could. After talking to Amanda(FCI Fetal Care Coordinator) I felt reassured that someone was going to help me. After our first appointment the FCI team took over the process and helped guide us through the pregnancy.
When we saw Dr. Vlastos at the St. Louis Fetal Care Institute he was marvelous at explaining the situation. It was hard information to hear, and he didn’t sugar coat it, but he explained it so well. As he was telling us the situation the tears just started to roll down my face.
Paul:
As soon as I heard the diagnosis I just wanted to find out more, I wanted to get all of the facts. Once I saw those I was really worried about Janna, I knew we had a lot of tough decisions to make.
At first it was hard for me to talk about. Once I started to share it with others it got easier and easier and the more I shared the easier it was to handle. It is such a roller coaster ride every time I tell the story. People’s first response to the pregnancy is congratulations, and then I’m sorry.
3. What have you learned through living through this experience?
Paul:
How strong of a person my wife is. I feel like she has handled this better than me. Words of wisdom for other dads; be as positive as you can. In the end I can’t control this and focusing on the negative just brings us down. I also thank god every day for our extended families, they have been a tremendous source of support.
Janna:
This whole experience has taught me not to think, “Why do bad things happen to good people?” I have not questioned why me. If you question the bad, you have to question the good. I made a choice early on not to question why, I needed to accept what was handed to us. I will learn a much as I can about CDH, deal with it as it comes, look at the situation and our options, and do what we as a family think is best.
A screaming baby, when Christina and Brad Huson gave birth to baby Brooke ten months ago this was the best sound they had ever heard.
When Christina was only a few weeks in to her pregnancy, they found out that there was a problem. Their tiny baby was suffering from a birth defect known as Congenital Diaphragmatic Hernia (CDH).
Congenital Diaphragmatic Hernia (CDH) happens when the fetus does not have a diaphragm, or there is a hole in the diaphragm. Because of this hole, or lack of a diaphragm, the contents of the abdomen, including the stomach, intestines, liver and spleen, can go into the chest preventing the normal development of the lungs. After birth the baby will have difficulty breathing if the lungs are not developed enough.
“We were so scared and didn’t know what to do,” explains Christina. “We heard about the St. Louis Fetal Care Institute from our ob/gyn and made the call.”
The next few months were full of doctor and hospital visits as baby Brooke’s development was monitored. “It seemed like I was in the hospital all of the time. We had tests and ultrasounds every week, along with our normal doctor visits. The hospital was my second home the last two months of the pregnancy,” recalls Christina.
Brooke Huson
On June 1, 2010 at 9:34 a.m. a 7 lb. 14 oz. Brooke entered the world via a c-section delivery. “Her delivery was so scary for me because we weren’t sure if she was going to make it. Much to my surprise she came out screaming,” she explains. “Because of her poor lung development we were not expecting this.”
As soon as Brooke was born, doctors began to work with her to make sure she could breathe and rest easily, and so they could do the necessary tests to assess her condition. After about two hours she was transferred to the SSM Cardinal Glennon Children’s Medical CenterNICU (neonatal intensive care unit). “The transport team was wonderful. They even gave me the chance to hold Brooke for a few minutes since I would need to be away from her at another hospital for three days,” says Christina.
When Brooke was only four days old, pediatric and fetal surgeon Dr. Ed Yang performed her CDH repair surgery. Using a telescopic instrument that allows for a faster recovery, and less scaring, Dr. Yang that made three, quarter-inch incisions to enter Brooke’s abdomen. During the surgery he was able to place her organs in the correct position and repair the hole in her diaphragm.
Click here to see the video of Brooke's CDH surgery featured on KPLR 11
“I have never been so scared in my life, but before I knew it, about 30 minutes after she entered surgery, Brooke was back in the NICU resting peacefully,” she says. “Thanks to Dr. Yang and his team the surgery was a success!”
Over the next few days, Brooke’s condition continued to improve. “We slowly saw her coming off the ventilators, drinking a bottle and gaining weight. She was becoming a normal infant,” she explains. “Brooke was born, transferred, had surgery and was home in eight days, it was truly a miracle!”
“After being there I know how scary a birth defect diagnosis can be, not knowing what is to come. It is easier said than done, but staying positive and remembering that god doesn’t give us anything we can’t handle is what got us through this tough time,” she says.
Now, ten months later Brooke is a healthy baby who loves being outside strolling around the neighborhood with her parents. “She is our miracle baby and I couldn’t imagine life without her. She makes every day better, and always puts a smile on our faces,” she says.
With the roller coaster ride that is pregnancy, remembering to take your prenatal vitamin can be a challenge. But, taking this one little pill every day can mean the difference between your child developing birth defects and being born healthy. So, what can you do to remember to take your vitamins every day?
1. Take it at the same time every day
2. Set a reminder alarm on your cell phone
3. Keep the vitamins out on the kitchen counter, or somewhere else where you will see them every day
Often times prenatal vitamins can make the nausea that comes with some pregnancies seem even worse. If this happens, try taking your vitamin with a meal or right before bedtime. You can also discuss this with your doctor; sometimes a different brand of vitamin will help ease the nausea.
One simple thing can help prevent up to 70% of major birth defects that impact your baby’s brain and spine: folic acid.
Taking 400 mcg of folic acid daily, at least one month before you get pregnant, drastically reduces the chances your baby will have birth defects of the brain and spine such as anencephaly and spina bifida.
These birth defects usually happen in the first few weeks of pregnancy, often before you find out you’re pregnant. This means that, by the time you know you are pregnant, it may be too late to prevent them.
There are also studies that show folic acid may prevent other birth defects such as certain heart defects, and cleft lip and palate.
400 mcg of folic acid can be found in most women’s multivitamins and prenatal vitamins.
If you have had a pregnancy impacted by a birth defect of the brain or spine, there is a chance you may have another. You should have a discussion with your doctor about taking 4,000 micrograms of folic acid every day before you get pregnant, and during the first few months of your pregnancy. Since this is 10 times the normal recommended amount, you will need a prescription, and you will need to make sure to take only one a day to avoid harm to yourself and your baby.
If your baby has been diagnosed with a birth defect the St. Louis Fetal Care Institute can help. There are a number of new treatments and fetal surgeries for conditions such as spina bifida, and we can help families facing the challenges of diagnosis such as anencephaly.
We are excited to announce that a new fetal surgery treatment for Myelomeningocele, commonly known as spinal bifida, is now available at the St. Louis Fetal Care Institute.
Recently, the results of the nine-year long Management of Myelomeningocele (MOMS) Trial were released. The results show that babies who have the treatment before birth are more likely to walk and experience fewer neurological problems.
As the former Principal Investigator of the MOMS Trial at Vanderbilt University, our fetal surgeon Dr. Ed Yang has a tremendous amount of experience in this surgery, which is now available at the St. Louis Fetal Care Institute.
Click below to watch two NBC stories about the Trial and the treatment.
We are honored to post a blog created by one of our Congenital Diaphragmatic Hernia parents. Janna is documenting the story of their CDH journey that started when she found out about the diagnosis when she was 17 1/2 weeks pregnant. She is due April 26, and has been coming to the St. Louis Fetal Care Institute for ultrasounds and fetal care coordination.
Click here to read their story: www.ourcdhstory.blogspot.com
