This is the story of my daughter, Gabriella (Gabi), and her heart surgery.
Finding Out:
I received a call from my OBGYN one day with the results of my Triple Screen test. He explained that for my age (which was 27 at the time), my results were borderline for the possibility of Down syndrome. He also said that he recommended an amniocentesis. At this point, I wasn't upset. I was pretty stunned. My OB's office scheduled my amnio at a perinatologist's office for the next week. During the time I waited for this appointment, I was told by many coworkers and friends, that either theirs or a friend's triple screen came back elevated and their child was fine. Never once did I hear that anyone actually did have a problem after receiving those results. So, naturally in my mind, I thought my circumstance would be the same.
The day of the appointment my husband and I went together. I was nervous about the pain of having an amnio, but excited that we would get to see our baby on the ultrasound during the amnio. We were even hoping to find out the sex of the baby. We were hoping for a girl. First, the doctor sat us down, and explained the risks involved with having an amniocentesis. I remember him saying "There is a 1 in 200 chance of miscarrying after an amniocentesis." At the time, 1 in 200 didn't seem like a big risk. We proceeded to the room to have the amnio done. The doctor first viewed the baby to check the baby's placement. My abdomen was prepped and the doctor explained, "I am going to inject some medication to numb your abdomen so you won't feel the stick; however, I cannot numb your uterus so you will feel pain." I tried so hard not to look at the needle as he brought it over to perform the procedure. I focused on my husband's face, but from my peripheral vision, I couldn't help but to see this very large syringe approaching. The jab of the needle was quick, but filling this large syringe with amniotic fluid was a bit time consuming. It was eventually over, and the specimen was handed off to a nurse standing by. The doctor then proceeded to use the ultrasound to view our baby. "It's a girl," he said. My husband and I were both excited. The doctor started looking at our baby girl's heart. We continued to talk about our new little girl. Eventually, we realized that this ultrasound was taking a long time, and this doctor was STILL looking at her heart. We quietly began to watch with him. The longer the ultrasound took, the more concerned we became. Finally, after what seemed like an eternity, our doctor said, "My equipment is not that good, and it is difficult to see the baby's heart, so I would like for you to go to Miami Children's Hospital and get a fetal echo cardiogram done just to make sure." At the time, I fell for it. Looking back now, I know this doctor seen the abnormalities. I was at a specialist's office. Of course his equipment is appropriate for viewing this. On the way out of his office, the doctor says to me "When you go to Miami Children's, make sure you tell them we are trying to rule out Down syndrome."
The fetal echo was done at a later time, and the cardiologist explained that it looked like my baby was going to have Tetralogy of Fallot (TOF) which he explained it was a heart defect that included a VSD-ventricular septal defect (which means a hole between the lower chambers of the heart causing mixing of oxygenated and unoxygenated blood), an overriding aorta, thickening of the pulmonary artery, and eventually because of the heart working so hard, it also causes thickening of the muscle of the right ventricle. He also thought that she would have an ASD-atrial septal defect (a hole between the upper chambers of the heart.) He also explained that surgery would have to be done sometime after the baby was born to correct the defect.
The next day, while at work, I called my OBGYN to tell him what the cardiologist told me the day before. He said he hadn't received the results yet of my amniocentesis, and he will call me once he gets them. Not one minute after I hung up with him, he called me back. He said, "I was handed your results as soon as I had hung up the phone with you, and your baby does have Down syndrome. I am sorry." I weakly managed to get the words out, "Okay, bye." I broke out into a hysterical cry. I was totally floored with these results, and I had been in so much denial that I never gave a thought that this could've been a possibility. I don't really remember calling my husband or my mother, but I do remember my mom telling me she was going to come pick me up at work, my dad would pick up my husband, and we will all meet at the OBGYN's office.
My doctor met with us all and explained that this was going to be a tough time for us, but we would have to make a decision on whether to terminate the pregnancy or not because according to the law it was still legal to terminate at this point for medical reasons, but it had to be within the next 2 weeks. Completely in shock, we all went back home. I had so many thoughts run through my mind: Why did this have to happen to me?...What does my husband want to do?... How is this going to affect my older child?... Were other kids going to make fun of my son about his sister or would they make fun of my little girl?....I loved my baby....I have already felt her moving inside me....and I didn't want to have an abortion. I cried nonstop that day from the time we found out until finally crying myself to sleep that night. I had to know how my husband felt, and he had already told me "Whatever you want to do is okay with me." I said, "That's not very fair for you to leave this decision all up to me. I need to know how you feel." His response was "That's my baby no matter what, and I want to keep her." Right then, I knew that termination was not an option for us. Looking back, I wish it never was an option.
Once the decision had been made, we began to look forward to our daughter's birth again. Of course we had concerns about her heart and how severe her delays would be.
**WARNING** Some Pictures May Be Graphic
This picture was taken the morning of Gabi's birth. I had a scheduled induction because she was 1 1/2 weeks late. Gabriella Justine was born November 1st, 1999 and weighed 7 lbs. 6 oz. There was a neonatologist and a nurse from the NICU present at her birth as well.
Gabi had to stay in the NICU for 9 days. She had trouble maintaining her temperature, and often had to be placed back under the radiant warmer.
After a battery of tests, they said her temperature regulation was due to hypothyroidism, placed her on Synthroid and finally let her go home.
This picture was taken on Gabi's 1st day home. I was nervous about bringing home a baby whose heart wasn't yet repaired, but at the same time I was very excited to finally have her home.
This is one of my favorite pictures of Jeremy (her brother) and Gabi. He was giving her Eskimo kisses.
Jeremy was a great little helper and really loved to hold and spend time with his sister.
Fast Forward:
Just before Gabi turned 3 months old, her reflux began to get out of control. She wasn't keeping anything down and was starting to lose weight. I took her to see her gastroenterologist who said that he thinks we are approaching the time that Gabi will need to get her heart fixed. To my surprise he said "Most of the time, once the heart is fixed, the reflux is fixed, too." (He was right. She never had a problem with reflux since her surgery.) The GI doc spoke to the cardiologist who agreed to put Gabi in the hospital and work on getting her scheduled for surgery.
This is the cardiac monitor that Gabi was placed on once admitted to the hospital prior to her heart surgery.
This picture was taken in her hospital crib. She was watching her Pooh Bear toy.
Three things to tell about this picture: First, It shows how lethargic Gabi easily got. Second, after an IV infiltrate, she had to keep a warm pack on her arm to decrease the swelling. Third, the headband she was wearing was used from the pressure bandage I had after donating platelets for Gabi in prep for surgery. 4 people donated for Gabi's surgery. Me and my mom (Nana) donated platelets, and her dad and Papa (my dad) donated whole blood. All of it was used for the surgery.
This picture showed Gabi smiling the day before surgery and shows a slight blueness in her face. The doctors and nurses forewarned me that some milestones may be lost after surgery. They were right, Gabi lost her smiling milestone. She started smiling again a few months later.
This was an early morning bath given by the nurse in prep for Gabi's surgery. They used a special cleanser to prevent any bacteria on the skin from causing infection with her surgery.
Gabi's surgery was 4 1/2 hours long. I got to walk her to the surgery holding area, kissed her, and off she went to surgery. We waited with family in Gabi's hospital room where we were frequently updated by the nurse practitioner about the progress of her surgery. The part I was most nervous about was that in order to operate, they had to stop her heart and place her on a heart lung bypass machine and when they were through, her heart had to be shocked to restart it.
This was the nurse practitioner who gave us our updates and the cardiac surgeon who performed Gabi's surgery. This was taken immediately after surgery.
This was our baby in the CICU. It was very hard to see her like this. I felt helpless. There were so many tubes and wires:
This is a closer picture to show the ET tube (coming out the right side of her mouth). It is taped in place to prevent it from becoming dislodged. The NG tube is coming out the left side of her mouth. The rolled blanket under her neck and shoulders provided for the proper angle of her airway. A cardiac electrode and her dressing are seen just above the blanket covering her.
This is a picture of the ventilator.
This picture was the taken the first time I seen my baby after surgery. Excuse my appearance, it was a very long night and day. I was wiping a tear that was falling from her right eye.
Gabi's dad visited after surgery. Notice the blood hanging in the background and the many pumps of medications.
This shows the cardiac monitor and many pumps.
A view from outside her hospital room. The wall of pumps provided IV fluids, antibiotics, pain medication, paralytics, sedation, and pressers.
Many family came to visit.
Nana visiting.
I originally wasn't going to let Jeremy visit his sister until she was awake and breathing on her own, but the nurse explained to me that it's good for siblings to visit. She said often they imagine the worst. Her nurse was very good at explaining to Jeremy what everything was for and why she needed it.
The next pictures were taken of Gabi's heart during surgery:
This is a picture showing the thickening of the pulmonary artery.
This picture showed the VSD (ventricular septal defect).
This shows the VSD repaired.
The stitched area here shows the ASD (atrial septal defect) repaired. The hoses pictured are from the heart/lung bypass machine.
For the year following Gabi's surgery, we kept the scar covered and never allowed it to get exposed to the sun to minimize the scar. Today, at 7 years old, her scar is barely noticable as you can see below:
Do you wanna know what's going on with Gabi today?
Find us over here at our blog: Gabi's World
