Our Letters of Hope

My husband and I were married for 5 months when we found out we were pregnant. We were overwhelmed and overjoyed at the thought of having a new baby. I began my routine doctor's visits and testing and found out that we were carrying a normal, healthy baby. Shortly after this we found out we were having a baby boy. What exciting news this was!! I was concerned about the disease Cystic Fibrosis, because I had a half brother that died with this disease and knew I could possibly be a carrier for this. I was tested & when I received the news that I was a carrier, I was horrified. I saw my wonderful brother suffer for his whole life and could not bear watching my child go through that. Our next step was to have my husband tested. That was the longest week of my life, or so I thought. As I my phone rang that Friday, my heart pounded with anticipation….My husband was negative!! What wonderful news. All thoughts of having a baby born with a disease was wiped form my mind. We waited and wondered what he would look like. As my pregnancy progressed, I began to have PIH (pregnancy induced hypertension) and had many late in my pregnancy ultrasounds. Numerous times when they zoomed in on his little heart I remember asking, "How does his heart look", always with the answer…STRONG. I was in and out of the hospital numerous times after that and at 38 ½ weeks the doctors said I needed to have a c-section. The wait was finally over. I was going to meet my son. January 26, 2009, Lawson Wilds Williamson was born. Although at the time, we did not know his name. On day three, the lactation nurse, Lee Lance, came in to help me with my breastfeeding and said that my baby looked like he was breathing funny and took him back to the nursery. A very long hour passed, and a nurse came in with the news that they were taking him to the NICU because he was very jaundice. I called my mother hysterical. She rushed over to be by my side. As we went up to see him, I could not believe how small some of the babies were up there. Lawson was 8lbs 2oz and looked like he did not belong up there with all those other little angels. We were told later that night that everything looked ok with him and the only thing left to do was a chest x-ray. My husband and I went back downstairs to get some rest. Early the next morning, my brother peeped his head around the corner to take my husband to breakfast at the cafeteria. My mother & I were left to wait for them to discharge my son & me. At that very moment, my world was to be forever changed. Two NICU nurses knocked on my door, never making eye contact with us. They said "you need to get anyone who needs to hear this conversation to come upstairs now." My husband was called and my mom & I headed upstairs. The three of us went in a conference room and there stood Dr. Trant. He began to tell us that our son's left side of his heart was small. I remember some big medical terms, but most of all I remember him saying the words "heart defect". As I went into shock, my mother asked, what was the next course of action, with the response "a helicopter is on the way to take him to MUSC for open heart surgery". We had about 20minutes to say good-bye to him and then had to make our way by car. We had to name him first. The night before, Ty Lawson, playing basketball for the North Carolina Tarheels, made the game wining shot against Florida State. Being huge Tarheel basketball fans, we knew it was meant to be. We would name him Lawson Wilds Williamson. Now we were to be discharged and go home to throw a suitcase together and drive to Charleston. Lawson had open heart surgery the next day and it was a success thanks to Dr. TY Hsia. What a relief. For the next month we lived in and out of hotels, The Ronald McDonald House, and The Children's Hospital. Lawson had some complications from his heart surgery. His vocal chord was paralyzed and therefore could not swallow food. He also had reflux and because of his paralyzed vocal chord was aspirating. He has had two gastric surgeries to enable him to come home. Thankfully Lawson will never remember all he has been through, but we will never forget. No body knows the pain of watching your child suffer, and not being able to do anything to help him. Not even able to hold him and rock him. Never having had the chance to change his diaper or give him a bath yourself. Not able to breastfeed him, rather pumping every 3 hours with the hopes of one day being able to bond in that manner with your child. Thankfully Lawson is now home and doing great. He may have to have more heart surgery in the future, he may not. We don't know what the future holds except that we love him more than life itself. I think the shock of everything was the worst. Having known nothing about congenital heart defects, we were in the dark. The facts are out there and it is up to us to get the word out.

1) Heart defects occur in 8 of every 1,000 babies.

2) Many heart defects can be detected before birth through the use of a special type of sonography called fetal echocardiography. Sound waves are used to create a picture of the baby's heart. Health care providers can use the information from this ultrasound to diagnose the condition and develop a treatment plan. Sometimes medications can be used to alter the beating of the heart and prevent further damage. If the heart defect can't be treated before birth, the health care providers will be prepared to give treatment as soon as needed after birth.

3) In the United States, fewer than 1 in 10 heart defects in children are detected before birth.

4)If pregnant women were tested by ultrasound later in their pregnancy than the first trimester, the odds of finding such a defect would improve greatly, as would the survival chances of a baby with a congenital heart problem, says Mary Jo Rice, a cardiologist at Oregon Health Sciences University in Portland. Prenatal detection would allow a mother to give birth at a cardiac center, where a team of heart specialists could be ready should an operation on the newborn prove necessary, Rice says. Early detection could also help prepare the family for the emotional strain, expense, and logistical problems of surgery on the newborn. "We need to optimize delivery to maximize survival," says Rice. Some heart problems could even be treated prenatally. In cases of fast heartbeats, for example, doctors can give medicine to the mother or the fetus directly through the umbilical vein. Rice advocates training ultrasound technicians to check images for cardiac irregularities. The point is to pick a time in gestation, at 18 to 20 weeks, when we can get good pictures of the heart," says Henry Sondheimer, a cardiologist at Children's Hospital at the University of Colorado at Denver.

I have had numerous people tell me that Lawson was here for a reason and he was bound for great things. I know this is true…but what if he is here so I can make a voice for all the unborn children that have heart defects? What if that is for his place in this world? Please, please, please help to join us in getting the word out. Heart defects are the leading cause of death in birth defect related deaths. By educating healthcare professionals and us as a nation, I know we can help the helpless children in our country. Thank your for listening to my story.

Brett Williamson

Lawson webpage : www.caringbridge.org/visit/lawsonwilliamson