Saving Little Hearts

My husband and I were so overjoyed and blessed with the arrival of our very first child on October 24, 2004. Haley Byrd Freeman weighed in at 6 lbs 14.7 oz. When she was born she had the nicest pink color that everyone mentioned looked like she had been laying out in the sun. She was the perfect picture of health and we were sent home after a few days. As the days continued, Haley was never a fussy baby and even showed herself to be a nosy little girl. I nursed her and everything had been going well although we noticed that she really slept a lot more than we expected. We visited her Pediatrician with her check-ups and his only concern with her was her low weight since she was only in the 5 -10 %tile. After asking that we come in for weekly weigh-ins, her Dr decided that we should supplement her with formula for one meal instead of nursing her one time a day. She showed a little improvement but really raised suspicion right before Christmas.

Being first time parents we really didn't know what to expect and we were actually more concerned with her baby acne and her dry forehead. But during the few weeks before Christmas, we really started to notice a few things about Haley that did concern us. She seemed to sleep a little more than usual and she would even fall asleep while I was nursing her. I could even vacuum in the next room and not wake her. Also, when she received her immunization shots, she just would just lay there. Her eyes would get big but she really never cried. Her hands and feet were cool too but being it was fall/winter, we just thought that was normal but still wondered. Then the week before Christmas, we really started to notice a few things that we really became concerned about. She had her 2 month appointment on December 27, 2004 and we were going to tell him all of our concerns. We had also noticed that one side of her chest seemed to be larger than the other side and her heart seemed to be beating fast. She still also hadn't put on much weight either. When we went in for her 2 month appointment, her Dr heard a heart murmur. It is a noise caused by the turbulence of blood flowing through the openings that allow the blood to mix. He didn't want to alarm and scare us but he said to rule out anything, he wanted to send us to a Pediatric Cardiologist. When we walked in the door with Haley, you could see the look of fear in their eyes and they told us to immediately come back. Their exact words were, "The baby's here, The baby's here." That's when my husband and I started to panic. She ran many tests on Haley including a chest x-ray which is a diagnostic test which uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film. An electrocardiogram (ECG or EKG) which is a test that records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias), and detects heart muscle stress. Then an echo cardiogram (echo) which is a procedure that evaluates the structure and function of the heart by using sound waves recorded on an electronic sensor that produce a moving picture of the heart and heart valves. After running these tests and a few others, she confirmed that Haley had a congenital heart defect called TAPVR. We were just stunned.

We knew nothing about heart defects. My grandmother and uncle both had open heart surgeries and we thought heart surgery was an adult problem.

TAPVR stands for Total Anomalous Pulmonary Venous Return. The pulmonary veins are the four blood vessels (two on each side) that return oxygen-rich blood from the lungs to the left atrium of the heart. (TAPVR) is a rare congenital malformation in which all four pulmonary veins do not connect normally to the left atrium, but instead drain abnormally to the right atrium by way of an abnormal (anomalous) connection. TAPVR occurs in one out of every 15,000 live births. The heart is forming during the first 8 weeks of fetal development. The problem occurs during this time, allowing the pulmonary veins to be attached incorrectly.

Haley had just begun to show some signs of a problem so luckily her Pediatrician caught her murmur early. Usually babies with heart problems appears cyanotic (blue coloring of the skin, lips and nail beds) in the first days of life. However, since Haley had a septal defect (hole in the chamber of her heart) that allowed a mixture of oxygen-rich (red) and oxygen-poor (blue) blood to enter the left heart and go to the body so that's why Haley didn't have any symptoms at birth. It was when this hole began to close that her symptoms started and her Pediatrician discovered her murmur. Also, her heart was working so hard that it was actually working off all of the calories she had eaten and that's why she wasn't able to put any weight on only a few ounces here and there. We are so thankful that her wonderful Pediatrician heard her murmur because he caught her problem so early when she had just begun to start showing signs of a problem.. Soon after he heard her murmur and we were diagnosed by the pediatric cardiologist, she was immediately admitted to the NICU. We were told we didn't need surgery tomorrow but it did need to be done in the next 2 weeks. So of course we didn't want to wait so we had to choose a hospital. Between: Birmingham, Atlanta or Boston. The cardiologist told us that Birmingham does not perform surgeries on babies under 10 lbs and would make us wait. I did not like that at all b/c who knows how long it would take for her to be up to weight. So we chose Atlanta and we were so happy we did. The next day (December 28, 2004) Haley was transported by ambulance to Atlanta. We could not ride with her which was so awful for my husband and I and we had to ride up by ourselves without our little girl. But her wonderful NICU nurse did travel with her and held her hand and that made us feel so much better. Also, Brian's sweet Aunt Kitty lived near the hospital and was able to be by her side until we arrived. Everyone in Atlanta was absolutely wonderful. From the surgeon, all of the wonderful nurses and so many others that were so kind and helpful. Haley had her surgery on December 30, 2004. We are so blessed and thankful to God and her wonderful surgeon and his staff that everything went well and she had a fast recovery. Her recovery went so well that we were discharged to go home on January 4, 2005.

Today Haley is a happy, energetic and full of life little 20 month old girl and she is doing wonderful. Her scar is actually hardly noticeable. She's walking all over the place which keeps us busy. It's so unbelievable how much energy she has. She had her last Cardiologist appointment this past December and she is cleared until next year. We thank God everyday and our loving friends and family and everyone that took care of her for all of their love and prayers that Haley made it through her surgery with no problems.

We are so thankful that her Pediatrician heard her murmur because many Dr's might of missed her problem. He took the time to listen to her and to our questions when many might have dismissed it.

Thanks for letting me share Haley's story with all of you and I just hope her story can at least save 1 baby. It's so important that we all get awareness out there for other families that might have to face this with their precious child. We were lucky that there are two wonderful "Heart Moms" in our area that gave us some information before we headed to Atlanta. It gave us a little insight as what to expect.

God Bless Take Care & Heart Hugs.

Brian, Michelle & Haley Freeman

PS- While we were in Atlanta we used a site called www.carepages.com. This site let us post updates and we still continue to use it now. We also can post pictures as well. This site was so wonderful b/c the whole time we were in Atlanta, I only used the phone twice. All you do is log-in and after I would make an update, the site would send out an e-mail.
If you would like to see Haley's it's www.carepages.com and she's listed as HaleyByrd.