“Shortly after she had passed, the whole sky turned bright pink and a rainbow came out…”
Siarah Brooke George, Trisomy 13, 10/14/2014 to 10/14-2014, Wadsworth, OH
On July 16th, 2014 my husband and I went for our routine 20 week ultrasound. Being our first child together, (I have 3 children and he has 4) the entire family was so excited to find out what we were having. When the ultrasound tech was finished she informed us that she was going to get the Doctor, and that the Doctor would probably take a few more pictures. When the Doctor was done taking a few pictures she turned to us and said she was glad that I brought support. She started telling us that our daughter was not healthy and they suspected a genetic condition called Trisomy 18 but said it could possibly be Trisomy 13. They did an amniocentesis before we left and told us the results would be back in about 2 weeks. We (Billy, my mom, and I) left the appointment absolutely devastated. For the next week and a half Billy and I researched Trisomy 18 & 13. On July 28th, 2014 the Doctor called with the amnio results, telling us our daughter has Trisomy 13. She told us most Trisomy 13 babies do not make it to delivery and if they do, they usually don’t make it past their first week of life. After the amnio confirmed Trisomy 13, we met with genetics counselors and learned that this was something that just happens, we also had an appointment with a heart doctor. He did a fetal echocardiogram. Siarah’s right side of her heart was enlarged, and there was coarctation of the aorta. They also believed that there may be a small atrial septal defect (ASD) and ventrical septal defect (VSD). We had many more ultrasounds to follow and learned that Siarah had holoprosencephaly, her eyes were really close together, and her nose was “trunk like” (also called proboscis), her kidneys were masses of fluid where it should have been kidney tissue, her bowels were inflamed, she had spina bifida, a two vessel cord, and she had rocker bottom feet. In the ultrasound, we also saw an extra finger on one of her hands.
Siarah was super active during my pregnancy and loved hearing her daddy’s voice (when her brothers and sisters tried to talk to her and feel her move, she wouldn’t move until she heard her dad). Even though we were remaining hopeful, after Siarah was diagnosed, we started pre-planning her funeral and burial with thoughts that if/when it happened we would be ready and not have to make emotional decisions.
Towards the middle of August, my blood pressure was high at one of my appointments so my mid-wife and the maternal fetal medicine doctors that were coordinating my care, started having me come every 2 weeks just to keep an eye on things. The next two months were full of doctor appointments, ultrasounds, and blood draws. I was extremely swollen and was having severe headaches, extreme fatigue, and my vision became blurry. Friday, October 10th, 2014 was my last appointment with the Maternal Fetal Medicine doctors. At that appointment I had a severe headache and the doctors told me if it did not go away that I needed to go to the emergency room the next day. We were having a benefit dinner to help raise funds for the funeral that Saturday, so even though the headache did not go away (it did dim down some) I did not go to the emergency room. Sunday morning I woke up feeling Ok. We ate lunch that day, and after I just did not feel good. I was extremely nauseous and thought maybe I was coming down with the stomach flu. The nausea did not subside and when I woke up Monday morning I felt even worse. I was working at home that day and was just staring at my computer crying. It was mid-morning and I decided I was going to use some sick time to try and rest thinking that might make me feel better. I laid down for a little bit but just kept feeling worse. A sharp pain started under my ribs (on the right side) so severe I could barely breathe. My husband decided to take me to the ER. As soon as we got there the doctors drew blood and were talking about tests that they would possibly run. A little bit later the resident OB doctor came in and asked me if I had had any bloodwork done recently. I told her I had on Friday, but had not heard the results yet. She said, well your platelets are low today. We need to wait and see what the rest of your results are and go from there. I’ll never forget her face as she came in to tell us that my liver and kidney function results came back, and they were declining. It was no longer safe to continue my pregnancy and they were admitting me and starting induction. I was having what was called “mirror syndrome” Siarah’s body was starting to fail, and mine was showing the same symptoms as hers. Never had we been so scared in our entire lives. We knew the journey we were about to start was going to be the beginning of a very rough road. After being admitted, the doctor came in to describe the induction process to me. Since I was only 32 weeks and 3 days, they told me it might take some time for my body to respond. They started off by inserting a pill next to my cervix. I was already 1 cm dilated and that was supposed to continue to dilate me. They told me after I got to about 4-5 cm they would start Pitocin to start my contractions. The dr put the first pill in at 9:45 p.m. and told me they would do that every 4 hours and monitor me to see how I react. They did not have monitors on Siarah so if anything were to happen during the delivery process, I would not get stressed out about it and have a harder time during delivery. At 1:45 the doctor checked me and I was 2-3 cm, so they inserted another pill. Around 4 a.m. I started having contractions. They just kept getting more uncomfortable with so much pressure. The doctor came in at 5:45 a.m.to check me and insert another pill. I was 4 cm, but while he was checking me my water broke. At about 6 a.m. the drs came back in and told me that I had to have an epidural (I had my 3 previous children natural and was hoping to do so with Siarah but about a week before I was induced Siarah decided to flip and was breach.) The doctors told me that since they were planning to deliver Siarah breach, there was a chance she would get stuck and they would have to use forceps and that is why I had to have an epidural. They checked me again and I was already 6 cm. At this point, I was in so much pain I told them I did not care what they had to do, but they better hurry because she is not waiting. As the doctor turned to leave the room, I had another contraction in which I rolled on my side in pain. When I rolled back onto my back, the nurse said to the doctors “You might want to get back in here, her head is out.” At 6:14 a.m. Siarah Brooke George came into this world. The nurse laid her on my chest and immediately checked her heart. She said “She has a heart beat, but its slow” I immediately sighed in relief and told my husband that it won’t be long. I knew there was a chance that Siarah could’ve been stillborn, but the whole pregnancy I prayed that God would give us just a little bit of time with our daughter. Siarah spent her whole life (51 minutes) against my chest before her strong little heart stopped beating at 7:05 a.m. She even moved her arm a little and made a gasping sound and smiled. Shortly after she had passed, the whole sky turned bright pink and a rainbow came out (even though where we were it was not raining.) The only colors you could see in the rainbow where pink, yellow and green (the Trisomy 13 awareness colors). We knew it was our Siarah telling us she made it safely. Siarah was delivered at 32 weeks and 4 days and weighed 3 lbs 7 oz and was 15 1/2 in long, with 11 fingers and 12 toes. She was absolutely perfect!
After delivering Siarah, the cord detached from my placenta. The doctor had to manually remove it and then I had to have a D&C done to remove the pieces that she could not get out. Shortly after the procedure was done, a photographer from Now I Lay Me Down To Sleep came and took pictures of our angel. We are so fortunate to have these photos and definitely recommend, no matter how hard it may be at the time, to take as many pictures as you can! You will not regret taking the pictures in the hard times, but you will regret not having any pictures when you are ready to look at them.
I was discharged that Thursday. On Friday we made Siarah’s funeral arrangements.Saturday morning I woke up and could barely breathe. I was out of breath just from taking a few steps. My husband called my mom who came and took me to the ER while he took care of our kids. They did and x-ray and found fluid in my lungs. I went into heart failure (post partum cardiomyopathy) from fluid overload. I spent the whole weekend in the hospital again. They gave me Lasix to get the extra fluid out of me. And made sure I did not have any blood clots.
A lot of people had told us that they don’t know how we were so strong, but I know that it was because we held onto our faith and trusted God’s plan. “Faith isn’t faith until it’s all you’re holding on to.”