Gabby's Story

In April of 2009, my husband, Jason, and I were expecting our 3rd child. I was 5 mos. pregnant and it was time for our "gender ultrasound." We were so excited when the technician said, "It's a girl!" Our newest addition was to be our 3rd daughter. Not long after getting the news of the baby's gender, we were told there was a problem with her heart. At first, it was supposed to be "nothing major" and hopefully would resolve itself before birth. Then we had an appointment for a fetal echocardiogram. "Your baby girl has a specific heart defect known as a complete AV canal defect," the doctors said. It is made up of several different defects and it WILL require open-heart surgery in infancy. Without the surgery, your baby will die before she is one year old. Obviously, we were devastated. Then the doctors told us that an AV canal defect is a major indicator of Down syndrome. We were told our baby had a 1:2 (50/50) chance of having Down syndrome. We chose to have an amniocentesis done so we could be prepared to welcome our daughter properly in case she would need special medical intervention at birth.

A few days after having the amnio, I received a call that forever changed me. It was our nurse midwife. "Your baby has Down syndrome," she said. The doctors also told us we had just a few days to decide whether or not to "terminate the pregnancy." Termination was never a consideration for us even though 92% of "Down syndrome pregnancies" are terminated.

After getting the news that our baby would have Down syndrome, I remember feeling numb and terrified. But I also knew we were very blessed to be having this baby since it took 2 years to get pregnant with her and a total of 4 years to get pregnant with our other two. It didn't matter to me that our baby would be "different" by the world's standards. I knew God had blessed us and would give us all the tools necessary to give our little girl the best life she could have. As every parent does, I had big dreams for her. I saw her in the future...living independently and perhaps getting married. But I also worried. Will she be able to speak clearly? Will she be able to walk before she's 2 or 3? Will she be teased in school? How will I manage all of her weekly therapy appointments and doctor visits? How will I survive handing my precious baby girl over for open-heart surgery? How would we be able to afford all of her needs? And the questions went on and on. But I prayed. I prayed a lot. And I knew, deep down, God would work it all out.

At 36 weeks, the placenta began to fail as it sometimes does when the baby has Down syndrome. My amniotic fluid was rapidly vanishing. It was exactly at the cutoff point for being "safe" for the baby. Two days later I returned to the doctor's office for another ultrasound and discovered the fluid was nearly gone. Our baby, Gabby, had to come out promptly. I had hoped for my 3rd vaginal delivery, but Gabby was transverse. Because of the low fluid level, she could not be turned. A c-section was necessary. The next morning, Gabby was born, weighing a surprising 6 lbs. I remember my joy in the operating room and then my fear when I saw her briefly and saw how blue she was. She required oxygen and her first Apgar was very low. I didn't get to hold her and she was taken directly to the neonatal intensive care unit (NICU). Other than some trouble regulating her temperature and having some "blue spells" while eating (due to her heart), Gabby was doing well. She developed jaundice and had to stay an extra couple of days. I developed severe post-op anemia and passed out in the bathroom floor. Our hospital stay was rough, as I spent much of my time on the phone trying to apply for various forms of assistance for Gabby's medical and financial needs.

Finally, when Gabby was 36 hours old, I was able to go to the NICU and hold her. It was glorious, and I will never forget it. She was so beautiful! We had some difficulties with breastfeeding, so I pumped and bottle fed her. Once we came home from the hospital, I continued to attempt breastfeeding daily. It took her about 6 weeks, but she was finally able to latch on. From then on, we used a combination of breastfeeding and bottle feeding pumped milk. Every day was a struggle, as Gabby had lots of issues with feeding. At some point we found out she had a submucous cleft palate. She had so many reasons she should not be able to breastfeed, but we kept going. I wasn't going to give up, as I knew how important immunity would be to a baby with a serious heart condition and Down syndrome.

Gabby was very slow to gain weight. Just before she turned 4 months old, she weighed only 8 lbs. 6 oz. and was still wearing her newborn clothes. Her heart was starting to give out. Echocardiograms revealed pulmonary hypertension and yet another hole in her heart in addition to the other holes and missing valves. Gabby was in congestive heart failure, and surgery could not wait any longer. She was taking 2 different medications to help with the fluids building up in her lungs as a result of her heart defects. Gabby was sleeping so much because it took all of her energy just to eat. But when she was awake, she was nothing but wonderful. She was smiling and starting to coo. She was holding her rattle and had discovered her tiny hands. Sometimes she'd suck on her fingers when she was hungry. She was rolling over, despite low muscle tone. She slept through the night and didn't fuss unless she was hungry or tired. She had the sweetest little personality and her big sisters adored her. They loved to help with her diapers, bottles, and picking out her clothes. They sang to her and rubbed her fuzzy little head to comfort her.

Taking Gabby in for her open-heart surgery was one of the hardest things I've ever had to do. That morning, she was smiling and active. While we were in the pre-op area, I got on the bed and laid Gabby on my chest (with her back to my chest) so she could be comfortable and look around. She was so content and had nothing but smiles for us. I wanted so badly to explain to her WHY she had to have surgery. The anesthesiologist came to take her to the OR, and I leaned over and kissed her. He started to leave and then said, "Give her one more, mom." So I kissed her again and felt as though my own heart had been ripped out, knowing they were getting ready to cut her open and stop her heart.

The surgery took longer than expected, as it took them a long time to get all the ivs and tubes hooked up. And then Gabby had trouble coming off the heart/lung bypass machine (the machine that was keeping her alive while her heart was stopped). But the repair went well and was successful. After many hours in the pediatric intensive care unit (PICU) recovery, Jason and I were finally able to see her. I had prepared myself for what she would look like, and that is pretty much what I saw. She had tubes and wires coming from everywhere. She was hooked to a ventilator, and she had gobs of bandages over the incision on her chest. She was a bit swollen, but I was prepared for that too. We stayed with Gabby while we could, but her room was very busy with doctors and nurses and parents were not allowed to stay the first night post-op. So we finally left to go down the hall to the sleep rooms and get some much needed rest. I took a couple of pictures of Gabby, kissed her goodnight, and then left.

Around midnight, Jason and I were awoken by the sound of someone pounding on the door of our sleep room. It was a nurse and she said the doctors wanted to see us right away. Half asleep, we dragged ourselves down to Gabby's room. I remember being startled by the number of people I saw in the hallway outside her room. When we went in, there were nurses, the attending physician, and one of the surgeons had been called back in. Gabby was not doing well. Her blood sugar levels would not stabilize. Her kidneys had stopped working, and her liver seemed to be shutting down as well. We were also informed that Gabby may have had a stroke, as she was not moving her legs. We were told she was in very critical condition.

I remember how sick I felt. I didn't know whether to cry or vomit or both. I prayed for God to heal my baby girl. The next day, Gabby was worse. She was moving her arms around, but her legs were starting to turn dark purple and she was having seizure activity. She was passing nothing but blood through her bowels. Being by her side was so hard, as she was opening her eyes a bit. The nurses assured me she was not in pain, but it was so hard to look in her eyes knowing what I knew.

The next day, things were even worse. Gabby's liver enzymes had gone from 3000 to 6000 (normal is 50). Her liver was no longer working. She was getting dialysis hourly for her kidneys. She could no longer move her arms and they too were turning the dark purple color that her legs were. Gabby's lungs were starting to be affected as well, and her ventilator was turned up on the highest setting. Gabby's blood would not clot, so she was being given various blood products round the clock. She had about 9 different pumps for medications and they were some of the strongest meds available. The ironic thing was that her heart was doing wonderfully. Her oxygen saturation was near 100% for the first time in months. But Gabby was being kept alive by nothing more than artificial means. Her extremities were dying. The doctor told us, with a very heavy heart, that he had to suggest we stop intervening. We were doing a dishonor to my baby girl and only delaying the inevitable. After getting all the facts and figures and pleading with the doctor, we knew what we had to do. We called the family and the pastor in to pray with us and say their goodbyes to Gabby.

After the family left the room, the nurses capped off Gabby's many tubes (still filled with her blood) and unhooked her temporary pacemaker and ivs. They wrapped her in her special pink fuzzy blanket that she always slept with, and they handed her to me. She was so swollen, and I remember being startled by how much heavier she was. She didn't look like herself, and that broke my heart. Jason sat by my side and stroked her head. The doctor removed the ventilator tube and left the room. Jason and I whispered to her that we loved her and that it was time for her to go with Jesus. I told her I'd see her again in Heaven someday, and I kissed her cheeks. She took about 4 deep breaths, and then she was gone, all in less than 5 minutes. The doctor came in and listened with his stethoscope to confirm that she had passed. I sat and held her for a bit and then helped the nurses bathe and dress her. Then I told her goodbye and we left the room. I'm not really sure how my legs carried me from that PICU room to the hallway. God was certainly holding me up.

The doctors were totally baffled by what happened to Gabby. The surgery she had normally has a high success rate with few complications. We were urged to agree to an autopsy in hopes that what is discovered may save the life of another baby in the future. We agreed and are still waiting on the report.

Going through Gabby's funeral services was hard, but we have had some wonderful friends and family here to support us with lots of hugs, food, cards, kind words, prayers, and more. We have a wonderful church family, and I am so thankful for their kindness. Gabby has taught us all so many lessons and changed our hearts for the better. She has made a huge impact on so many and reminded us all that every child is precious, no matter what "differences" he or she might have from the majority. Gabby taught me to take one day at a time and be thankful for every single second I have on this earth. She also taught me that being a parent to a child with Down syndrome is never a burden but a wonderful blessing instead. I hope to spread that message as long as I live, in memory of my sweet baby girl.