Savannah-Maria’s Heart Story

Told by her mom Lynda.

Diagnosis: VACTERL assoc. : A-Imperforated anus, C-DORV with pulmonary atresia, right ventricle to pulmonary conduit, VSD, mitral valve stenosis and regurgitation, pulmonary hypertension, pacemaker, T- tracea-esophageal fistula, E-long gap esophageal atresia
At: 16 weeks

My story begins when I was 7 weeks pregnant. I did not know that I was pregnant at the time with my first child. I thought that I was just having my usual menstrual cycle, but the bleeding was getting heavier after 7 days instead of lessening. I immediately took myself to the hospital and they told me I was pregnant and there was a possibility that I might miscarry. All this information took me by surprise. While I was laying there in the ER hospital bed, I felt numb. This pregnancy did not become real to me until I was in the clear. I managed to stay pregnant.

When I was further along, I took a triple screen blood test. This test checks for potential genetic disorders, spina bifida, and Down’s syndrome. My test came back saying there was a possibility I would have a child with Down’s syndrome. I decided to go ahead with the amniocentesis to check if in fact this was the case. The results of my amnio specified I wasn’t having a baby with Down syndrome. During the amnio they do an ultrasound of the baby and it showed at 16 weeks there was something not right about my baby’s heart. In addition, they did not see a stomach because she was not swallowing amniotic fluid. I did not know what all this meant, but I knew something was wrong with my baby when you have nurses looking worried and trying to comfort me by laying a hand on my shoulder. I was told to come back in 2 weeks to do another ultrasound.

At 18 weeks, I had my 4th ultrasound of my baby. This time they felt certain something was wrong with my baby’s heart based on the blood flow coming out of the heart. I was then referred to see a pediatric cardiologist at Children’s Hospital Boston for a fetal echocardiogram. I still felt like I didn’t know what was going on.

Then at 20 weeks, I went in for the echo. By the end of the visit, I come to know the bad and awful truth. My baby would be born with Tetrology of Fallot and would require 3 or more surgeries. On my way home, I began to cry. I felt scared and helpless. In time, I learned to accept it. The doctors made me believe it was fixable which put me at ease.

Just when I started getting used to the fact my baby would be born with a heart defect, things went from bad to worse. For several weeks and many ultrasounds later, the radiologists still could not see a stomach present in my child. Everyone made me believe there was nothing wrong with this because my baby was just not swallowing amniotic fluid at the time. What was different was my amniotic fluid was starting to build up over time. This raised another red flag.

I was going back to Children’s but this time consulting with the Fetal Advanced Care Center. They requested an MRI of my baby, and they discovered she had esophogeal atresia which is a gap between the esophagus and stomach. This explained why there was no amniotic fluid going to her stomach.
These specialists kept telling my husband and I my baby’s defects were fixable. It helped hearing that, but they also gave a vibe of concern. This concern to me translated into possible death for my child. They never said it, but I felt it. In order to protect myself from falling apart, I started to live day by day and stopped looking ahead to my child’s future. This is why I didn’t want a baby shower. I did eventually have one but that is another story.

With all these problems, my OB wanted me to see an OB who deals with high risk pregnancies. I felt like my original OB was abandoning me, but she made a good move by putting me in better hands.
All of this was starting to really get to me. I was afraid for my unborn child. I needed help and asked everyone I knew. My husband was there for me, but he was in the police academy. This meant he wasn’t around 100 percent of the time. I did not want to be alone anywhere. I asked for rides, and people to come with me to my doctor’s appointments.

By my 3rd trimester, I was having an ultrasound every week and being checked for contractions. With the extra amniotic fluid, the body is fooled into believing one is ready to deliver. Everyone by this time wanted me to stay pregnant as long as possible because I had a very good chance of delivering prematurely. At 30 Weeks, they gave me steroids to help my baby’s lungs mature quicker in case she decided to come early.
At 33 weeks while in a birthing class, I felt contractions. Following the class, I went up to get checked out and in fact I was having contractions 5 minutes apart the whole night. Well, once they noticed I was 2 centimeters dilated they went to work to try to stop my contractions. They put me on Magnesium. It was horrible, but this did not do anything to stop my contractions. Their next course of action was to extract 2 liters of amniotic fluid through amniocentesis. This did the trick, but it took a while before the contractions were further apart, and they kept me on Magnesium until they were confident I wasn’t having my baby that early morning.

Then they kept me on bed rest. It only lasted a week though before I started having contractions again. My plan was to have a vaginal birth and an epidural. I only got an epidural. My plan for a normal birth wasn’t going to happen. After they broke my water, my baby’s heartbeat dropped to the 60’s. They immediately called for an emergency C-section. My husband was nowhere to be found and I was all alone. He did show up after his daughter was being examined and cleaned. I was mad at him, but at the same time happy to have given birth to a little girl. My husband really wanted a little girl and my eyes filled with tears because even though we didn’t get a healthy child we got our little girl. Another surprise for me was that I got a few seconds to see her before they whisked her away to the NICU. I was previously told she would immediately be taken away. With my guts hanging out in this room full of specialists and nurses, all I could think about is when would I see her again.

~Lynda, July 2009