Paige's Story
Let me start at the beginning. I was hospitalized March 3, 2007 at Ruby Memorial Hospital in Morgantown, WV with polyhydramnios (too much amniotic fluid). I was 32 weeks pregnant. I was having contractions and was shipped there by ambulance from my local hospital in Martinsburg, WV. Ruby Memorial (also known as West Virginia University Hospital) was 2 1/2 hours from home, but they were best suited to care for me there.
I had been diagnosed with polyhydramnios 2 weeks earlier. Since then, it had gotten so out of control that I was having contractions and went to the ER. I was admitted to L&D and started on a Magnesium Sulfate drip. My AFI (Amniotic Fluid Index) was 39, up from 29 two weeks earlier when it was diagnosed. (Normal AFI is below 25.) You know how the doctor measures your growing belly at your routine appointments? The measurement is supposed to closely match your week of pregnancy (if you are 31 weeks you should measure close to 31 cm). I was measuring 45 cm, as in, 45 weeks pregnant!! I was HUGE. I had a searing pain in my lower back. My belly was so large resting on top of my legs that my right leg went numb.
I was hoping that once they got me there they would say, OK, this girl is miserable. We need to deliver this baby right away. The contractions had subsided, and the first doctor that saw me said no, they would not intervene in her birth, and that I needed to stay until I delivered. He explained that this was in my best interest, and Paige's, because with all of the extra fluid, if my water were to break, the extreme force of it all rushing out of me could cause placental abruption (the placenta to tear away from the wall of the uterus) or a cord accident (a knot in it or it catching Paige around the neck), both of which were medical emergencies that my little hospital were not equipped to handle. He went on to say that I was the size of a woman pregnant with triplets, and that he did not expect me to be pregnant much longer. I wondered what his idea of "much longer" was. He said they would do amniocentesis for comfort to drain out the fluid if I became short of breath and having respiratory distress. They explained to me that this excessive fluid was more than likely being caused by a TE (Tracheoesophageal) fistula, a hole between Paige's trachea (windpipe) and esophagus (food tube). A healthy fetus swallows amniotic fluid and pees it back out, keeping the level in a normal range. If Paige had a TE fistula, the fluid she was trying to swallow would pass through the hole into her lungs, and she would just breathe it back out. (Healthy babies do breathe the fluid as well to help their lungs develop and prepare for the act of breathing oxygen.)
I had many doctors--Ruby Memorial is huge--and one of the other doctors, who ended up caring for me the majority of the time (I'll call him Doc), thought that the polyhydramnios was idiopathic (no know cause), which happens sometimes. It was possible Paige would be born healthy and completely normal. And if she did have a TE fistula, it could be fixed surgically. It was not exactly an easy procedure, but one their surgeons were familiar with and had performed successfully many times. Needless to say, I was not worried about anything. I am a Registered Nurse, and I was able to absorb all of the information with understanding and accuracy. But I hated the idea of being there away from my kids. I explained to Gabby, 7 at the time, that I had to stay, because it was best for Paige, and Jesus was looking out for her. I would be home soon and Paige would be with us. Doc gave me the timeline: if at any time between this point and 35 weeks I needed an amnio for comfort, they would test the fluid for lung maturity. If her lungs were mature, they would deliver her. If not, I would have to wait longer. If I did not need an amnio until then, that would be the point I would have the first one, and they would check her lung maturity. Mike is a Respiratory Therapist, and he & I both said, my gosh, at 32 weeks now, I'm sure she's ready! I had my sights set on no longer than three weeks.
A few days later, I needed my first amnio. My AFI was up to 42 and I was contracting again. I was a little short of breath, and when the doctor asked me about my breathing I said yes, I was having a little trouble. They drained 2 liters of amniotic fluid over one hour. The initial prick causes a sharp pain in the grion, and an ache in the uterus. The draining caused contractions. We're talking hard-core, no epidural contractions. Luckliy I don't use pain medication during labor, so I worked through it. I felt like I was three months pregnant when they were done with me. I felt wonderful. I took pictures---and you couldn't even tell they'd drained me. (Guess what-amniotic fluid is not colorless, it is actually dark amber, like pee! Doc said that's because that's exactly what it is, baby pee). I was still huge, but I felt better. I waited anxiously for the lung maturity results. It came back low, abnormally low. I asked why. Doc said it was probably because it was so diluted.
I had an ultrasound almost every day. My AFI stabilized, and at 35 weeks I had the planned amnio that Doc had promised me. He drained out another 2 liters. Lung maturity test, still negative. I was overwhelmed and exhausted. I had been there 3 weeks. I wanted to go home. I asked Doc if he thought something was wrong with her lungs, that they would never mature? He said no, they just weren't mature yet. At 35 weeks?? Yes, he said, it was possible. So he promised me at 37 weeks he would induce me, no more tests, he would do it then. Two more weeks in the hospital. Mike brought the kids to see me on the weekends. Other than that I stared at the four walls and television screen. I was allowed up to the bathroom and to shower. I went out and walked in the halls every once in a while. The girls wheeled me down to the gift shop if they had time. I was thankful for all-private rooms. The doctors actually let me go out to dinner at Outback Steakhouse with my family on my birthday, March 17th.
Induction day, April 6th, 2007. They started me on Pitocin. The contractions were weak. They bumped it up. The contractions got a little stronger. Doc broke my water with a scalp probe and placed it on Paige's head (to monitor an accurate heart rate). Eveything looked fine: he promised me he would make my contractions hurt, and we would have a baby. I should mention, I loved this guy. He was soft spoken, friendly, a little goofy, and didn't mind standing around my room talking to me & my family. Paige's heart rate began to drop. I heard the beeping and saw the number go down. 100-98-76-54. Everyone rushed in. They gave me an injection of Brethine to stop the contractions and turned the Pit off. They put an oxygen mask on me. Her heart rate stabilized. Doc said this happens sometimes after the water is broken: the baby takes a while to adjust to the change. They started the Pit again. Her heart almost stopped with my contractions. They rushed me into the OR and performed an emergency c-section with a spinal. She was born, not breathing, and had to be recusitated. At first they didn't put her on a ventilator, but after a few minutes did. She was in an adjoining room and Mike went over to see her. He said she was little and she looked up at him when we spoke to her. He said she had long second toes like me.
Doc popped around the drape as they were sewing me up and said Paige did have a TE fistula. They also thought she had esophageal atresia. What's that? I asked. That means her esophagus is not connected to her stomach. Ok, we'll fix it, I thought. He and Mike talked me out of the tubal I had signed consent for.
I was taken to my room, unable to move my legs after the spinal. It was a very weird feeling. I had terrible shakes, as if I were cold, but I wasn't. The staff said they had never seen a woman NOT shake after a c-section. After about a half an hour they wheeled my bed into the NICU so I could meet Paige. It was so strange, going in there, and having to ask which baby was mine. She was on the ventilator, sedated, making her own breaths. She was 5lbs, 3oz--a good size, but small compared to my 9 pound babies. The surgeon scheduled her for surgery to fix the esophageal atresia and TE fistula. The pediatric cardiologist said she had done an ECHO (ultrasound of her heart) and drew us a picture of all the little deformities in her heart, but she said it's functioning properly, and it looks OK. I was optomistic. I had no feeling of impending doom or sixth sense that something else was wrong.
They cancelled surgery the next day and told us they thought, because of some abnormal physical features, and everything going on inside of her, that she had Trisomy 18. We didn't know what that was. The geneticist was called in, and she began a long description. It boiled down to, Paige's lungs had never developed. And she would never be able to breathe off the machine. She needed a blood test to diagnose this for sure, but she had seen Paige, and she believed Paige did have Trisomy 18.
We got confirmation on April 9th, 2007. We had her bathed, removed from the ventilator, and brought into us in my hospital room. She was not breathing and her heart beat for only 30 minutes. She kept gasping, agonal respirations, the body's last-ditch effort to live.
The entire experience was shocking, sad, tragic, and unexpected. Doc came in, at my request, before I went home. He had tears in his eyes. He said how sorry he was. He said he should have tested the amniotic fluid for a chromosomal problem. I told him I was glad for the way things had turned out and I did not feel he had done anything wrong. We left an hour after she died and headed for home.
I have a very strong faith. I was not, and never have been, mad at God. There are so many things I have to be thankful for. We got three days with her. We got to hold her when she was alive, with all of her tubes. If she had been diagnosed before birth, they wouldn't have sectioned me, and Paige would have died during labor. We got lots of pictures. We had a funeral, surrounded by friends and family.