Cardiac complications and Hydrops in Indonesia - Amy's Story
Our third son Phineas’ story began about a month after our family moved overseas to Indonesia. We had just lost a baby due to ectopic pregnancy 2 months prior and weren’t expecting to get pregnant again so soon. God had other wonderful plans. In the midst of culture shock and the stress of transition, we found out we were expecting. We were nervous and excited, eager to have another baby in our arms. To make it even more exciting, our language teacher found out she was expecting as well, one week behind us! Thankfully, other expat women recommended a doctor and accompanied me on my first few visits before I understood much of anything. It was a definitely a different experience as the main way that I was checked was by ultrasound every time. Everything was looking fine, and I wasn’t worried once I saw the baby was in the right place, so I didn’t pursue some of the routine testing done in America and was even hoping to try a home birth, if possible.
However, all our plans changed when I was around 25 weeks along. The doctor found fluids around my baby’s stomach, called hydrops. They weren’t able to help us in our city, so we had to fly 2 days later to Singapore. I spent a full day going from doctor’s office to doctor’s office by myself since my husband was taking care of our other 2 boys. It turned out that our baby’s heart rate was around 260 beats per minute, over double a normal baby’s heart rate, and the fluids were around his stomach, heart, and brain. It was determined that I needed to take medicine to slow down his heart rate, about four times the amount a normal adult would take to slow their own HR. Because of that major risk, I had to stay in the ICU to monitor my heart rate continually and see how Phineas responded to the medicine.
I was finally checked into an ICU at a public hospital at 9 pm that night. The worst part was that I hadn’t eaten very much that day. After all the stress of the past 4 days, I finally broke down when the nurses told me the cafeteria was closed and all they could give me were some crackers and Milo. I didn’t sleep much that night (I had a roommate that was throwing up a lot, and they never dimmed the lights since most ICU patients are unconscious.), but I was comforted to know that hundreds of people were covering us in prayer.
God worked many miracles for us during those weeks. I had no side effects from the medicine and it worked to lower his heart rate! Through a chain of 7 people, we were able to find free housing! My parents were able to fly over while I was still in the hospital because the doctors were saying that he may need to be delivered if the medicine didn’t work. After 3 days in the ICU, I had to stay in the hospital for the rest of the week. Once discharged, I had 2 appointments per week to monitor his heart and fluids. After all the fluids drained from his body 6 weeks later, we were able to return to Indonesia for 4 weeks and continue language learning before going back to Singapore to wait for his birth. The pediatric cardiologist told us that he had trained doctors in our city in Indonesia and had had to re-diagnose some of their patients, so once we heard that, we decided to return for the birth so there would be clear answers as to what was wrong with his heart.
Once we returned, I had to continue getting checked often, and there was a German doctor who was very concerned about my baby’s size. He was measuring large and at 37 weeks, the doctor began pressuring me to get induced. Both my first babies were born naturally with no interventions, and I wanted to continue that trend, so getting induced sounded like a bad idea to me. I was able to hold out until the day before his due date, when I let her give me a membrane sweep. That was enough to get labor started. I was very uncomfortable that whole day and at 2:30 am when I got up to use the restroom, I had a bloody show. About an hour later, my water broke.
I was doing well laboring at home with my husband and mother-in-law already awake and alert to what was happening. (Praise God my MIL came as we had no one else to watch our big boys.) When I overheard my mother-in-law tell my husband to trust me whenever I said to go to the hospital, I felt like it was time, around 4 am. Though my first son took 36 hours to come, my second took only 6 hours, so we knew it could be quicker.
Once we were in our room, I was mostly confined to the bed, though I didn’t have much desire to move around by that point. The first nurse we had was so loud and distracting, and I was eager for her to leave. She took forever to check me and when she did, she said that I was only at 5 cm, but not to worry because by the time the doctor comes, I’ll be ready to push. I was so discouraged as I’m pretty sure I was in transition already and she just said that so I wouldn’t try to push before the doctor came.
At one point my husband had gone to the bathroom and I had the desire to get on all fours, so I did. That nurse came in freaking out. She yelled that I wasn’t allowed to do that then grabbed me and started yelling for help. I got mad at her and told her to leave me alone, and then I just stayed there until I was ready to move. Another time, she offered me gas and I agreed, until my husband reminded me that I didn’t want that, that I wanted to be alert and with it when the baby was born, so I had to push the gas away.
Thankfully I was only at the hospital for about an hour before the baby came. The doctor was called and she had to drive faster than ever before to make it on time. I was most comfortable laying on my side, so I stayed in that position and pushed. I’m not sure how long I pushed, probably about 10 minutes. I was able to lift my head up and pant some in order to not tear, and the doctor did a great job of coaching me. A couple times she encouraged me to push without a contraction so it wouldn’t be such a hard push, but slowly ease him out. That was a little strange and I didn’t have a lot of strength to push without a contraction, but maybe that was better. As it turned out, I pushed out a 9 lb. 15 oz. (4.5 kg) baby with only a small tear! It was the least amount of damage I’ve had yet. Part way through the pushing, I reached down to feel his head, not sure if I did or not, but they said it was there. Also I knew the doctor was very concerned about his shoulders getting stuck (shoulder dystocia), so I pushed pretty hard to get his shoulders out so she’d stopping worrying. This was the doctor who wanted to induce me and had told me all the risks and all the ways they may intervene, but thankfully the only intervention she asked about was an episiotomy and she respected our “No.”
At 5:35 am when Phineas was born, he cried! And he was laying on the bed all purple and all I could say was, “He’s alive! He’s alive!” We were so thankful! After the pediatricians checked him out, I was able to start nursing Phineas, but only for about 20 minutes before he was taken to the special care nursery where he stayed for the next 4 days. I got to stay at the hospital every night that Phiny was there except the last night, and my husband was wonderful to push me in my wheelchair down to the nursery to nurse him every 3 hours or so. It was not the ideal situation, but they had to continually monitor his heart.
Phineas was diagnosed with Wolff Parkinson White syndrome, a rare condition in which one’s heart has an extra electrical path and can start racing at any moment. He was given beta blocker medicine which he continued to take until he turned 2. Praise God, we have never had another incident of his heart racing and he has been a big, strong, healthy boy. I take him back to the cardiologist every year for a checkup, and this past March while we were there, we found out I’m expecting Phineas’ baby brother at the beginning of November. Thankfully, this pregnancy has been uneventful (except for the worldwide pandemic of course;)!
*Babies are diagnosed with Hydrops when abnormal fluid levels are found in at least two different parts of their bodies. As Amy reports, Phineas was found to have extra fluid around his stomach, heart and brain. This can sometimes be caused by heart problems and so thankfully this resolved when Amy took medication for Phineas' heart rate.