Saving Little Hearts

Adela’s Story

No one expects it to happen to them. A positive pregnancy test, a second child on the way, and then an unusual ultrasound changes your life.

My first child, Josephine, was born April 13, 2003. She was a healthy strong and beautiful baby. When I found out I was expecting again, I was overjoyed. My expectations were for another perfect pregnancy, delivery, and precious healthy baby. Never in my wildest nightmares would I imagine hearing the words spoken to me at my first ultrasound with baby number 2. “We want to see you again in a month. There might be a problem.”

For almost a year I have put off writing this for several reasons. One reason is that I do not have any spare time to sit and write it out, now that I blessed as a mother of two children. The other main reason is that if I put it down in words the reality would be too overwhelming for me. Words do not begin to express the anguish, stress, and fear that overwhelmed us.

At the first ultrasound, the tech measured a discrepancy in the chambers of our baby, Adela’s heart. The left side was much smaller than the right. The doctor reviewed and confirmed the pictures and asked us to come back in a month to see a specialist. He and the OBGYN tried to downplay the situation and not cause alarm. “We’re only being overly cautious. These things show up all the time; I’m sure it’s nothing.”

On returning in a month, the chambers continued to be uneven. They took hours to look all around the heart and measure the blood flow. A specialist from Sibley Heart Center finally discovered the supposed reason for the problem. She described it to us as Coarctation of the Aorta. Some part of Adela’s aorta was too narrow for blood to flow through to the rest of the body; she assumed it was the arch although she could not see it via ultrasound. As long as Adela lived inside of me, she was fine. Apparently there is a valve that works in place of the aorta, but closes soon after birth. At this point, the doctors were still guessing. They had us return in another month to see if it became clearer.

Each time we went in, it seemed they gave us more bad news. At one point, they discovered a hole in Adela’s heart (VSD) toward the upper part. The next time they discovered another VSD in the lower part. Her mitral valve began looking as though it was slow in moving and therefore not functioning properly. Her thigh bone appeared to be abnormally small in comparison with her other measurements. Her body weight appeared to be 4 pounds less than it should have been. Her growth had stopped. Her arm bone was smaller and abnormal than it should have been. They told us each of these things with assurances of “unconfirmed until birth.” They’re reasoning was that it was better for us to expect the worst and then be pleasantly surprised.

We made the decision not to tell others until it was closer to time for her birth. Neither of us felt comfortable talking about it with anyone besides each other. We did not want to field questions and comments from everyone when we barely knew what we were dealing with. You can go your entire life never knowing what “coarctation” even means, but suddenly you are studying a new medical language because your child’s life literally depends on it. It was difficult to not divulge the information but how did one even begin to put it into words. The Lord gives nine months to parents for preparation, both emotionally and physically, but how does one prepare for something like this? As I washed and folded the baby clothes, I wept. Would I actually bring home a baby to wear these clothes? Should I let myself love this child knowing she may be gone in moments? Would she be normal or a child who needs constant medical care? How would her “condition” change my family’s lives?

In January, Adela’s weight became a serious concern. The doctor was ready to induce or have a C-section if she did not grow significantly within a month. The cardiologist convinced him to wait a month for the baby’s heart’s sake. The smaller she was, the less of a chance she had and the more serious the surgery would become after birth. In February, we went for one more ultrasound with the cardiologist before we were induced. She thought the fluids were at an extremely low level and had me see the doctor. We prepared by packing, having a sitter for Jo, and calling all of our family with the news. It turned out the fluids were fine, her weight had improved, her mitral valve was functioning, and her heart had not worsened. They decided to put off inducing until 10 days before the due date, making her new due date March 15^th. Before the induction date, we decided to go for a second opinion. We went to Sibley Heart Center at Egleston. Dr. Mehle confirmed the coarctation. He thought the chambers of the heart were even more drastically different in measurement than the first doctor. He foresaw an even more serious surgery called the Norwood, where the right side of the heart is changed into the left. It truly prepared us for the worst, although at that point we didn’t think the diagnosis could get any worse.

My daughter decided to come the night before the induction. The doctor on call told me to come in immediately and all of the staff was alerted to our situation. They had prepared me for a c-section, but would let us try natural childbirth with internal heart monitors on the baby. If there were any signs of distress, they would immediately operate. Her heart-rate slowed a few times during contractions, but stayed strong. At birth, her APGAR score was 8. All of the specialists were in the room for the delivery and ready to whisk her away if need be. She appeared to be fine. All of the doctors said, that unless they had caught the problem on ultrasound, they would never have known or slightly suspected. She had a slight murmur, but nothing that would have alarmed them. We held her for a few minutes and then she was taken to the ICU to be checked more thoroughly and receive the drug that would allow her valve to stay open and keep her from relying on her aorta.

Adela Breanne Weaver was born March 14^th at 11:57 a.m. The NICU (Newborn Intensive Care Unit) at Egleston’s Children’s Hospital of Atlanta was full. A bed opened the afternoon of the 15^th and she was transported via ambulance. They reassessed her there and decided that surgery was extremely urgent. However, due to overcrowding, she could not be fit into the schedule until the 17th.

The wait was terrifying. She looked so peaceful, in spite of the many monitors, but we could not see what was hurting her internally. We stayed with her as much as possible and were miserable while apart.

Finally, the day of the official surgery arrived. We were there early holding her tight, knowing this may be the last time. We walked with her bed to the operating room When they pushed her behind the doors and told us they would call with updates, I nearly died. How could this be happening to someone so innocent, pure, and tiny? She should have been surrounded by good and instead she was going through heart surgery the first week of life. Friends from church came to visit, but we weren’t in the mood for company. The OR called and let us know that the anesthesia worked and the surgery was beginning. After what seemed like hours upon hours, the surgeon met with us to tell us everything went beautifully. He said the area was more pinched than expected causing them to splice the aorta and reconnect it. Overall, we could not have asked for a better surgery.

The days following were long and terrifying. Adela was so swollen and delicate. She was on breathing machines, blood pressure monitors, and so many other machines I cannot recall. It was a roller coaster of a recovery. Her heart continued to do well, but she could not keep anything down. Here they would not allow her to ingest anything since birth (all of the way to day 10) and now she couldn’t. She was fed through a feeding tube, a most unpleasant experience.

Finally Adela was moved to her own room, I arrived in the room to find her precious head half shaved, with bleeding pricks all over her scalp. The nurse informed me that they had tried to put an IV into her scalp, in case an emergency arose. They tried multiple times, but the IV would not take. They sedated her because she became too hysterical. Then after all of the trauma, they decided it was not truly necessary in the first place. This was the final straw. How could they do this to an infant who had already been through so much?!

I stayed with her every minute of the week, until she was finally cleared to come home. It was such a joyous and fearful occasion. We were only minutes from the hospital, but I worried about all of the things that could go wrong. Thanks be to God that nothing did go wrong. She healed. She ate. She grew.

Now, Adela sees her cardiologist for annual checkups. She just had her first birthday and is what the cardiologist referred to affectionately as an “active baby.” The Lord made her strong and has blessed us beyond belief!

All of that being said, there are no words to describe the ongoing mental and emotional battle a parent of a heart-baby goes thru on a daily basis. The heart is unseen. We cannot see if it is working properly, so we constantly check for signs. Are finger and toenails rosy pink? Are they breathing through the night? Why is my child out of breath? Do we let them live normally or limit their activity? Do we have more children? So many questions haunt us daily. Our prayers are that these haunting questions are the worst part remaining…that our children’s hardest trial in this life has already passed them by. Only time tells.