“Ivy has made me a better person, opened my eyes, softened my heart, yet toughened me up and made me a better believer in God..”
Ivy Thompson-Sigler, Trisomy 18, 12/24/2012, Wayne, WV
With tomorrow being the 2 year anniversary of Ivy’s life saving heart surgery, I want to share a condensed version of living in a hospital for 15 straight months with Ivy. She was born Christmas Eve 2012. She has trisomy 18 also known as Edwards Syndrome. She is 2 now and very soon to be 3.
We were transferred 3 times from Huntington, WV to DC, back to Huntington, then to Cincinnati, Ohio. I started staying/living in her room with her when she was turning 2 weeks old till she came home 15 months later due to seizures and some other issues going on. I was afraid to go home and leave her.
Here is how God worked in our lives and miraculously answered many prayers.
I started praying when she was 2 months old to get her to a heart surgeon in Houston Texas, Dr. Charles Fraizer. We found out about him through a fellow trisomy 18 mom/friend. He was the only one that would accept her due to her chromosome issue, trisomy 18. Everyone was turning us down including Cincinnati, except Dr. Frazier. After being accepted by Dr. Fraizer I was told our insurance wouldn’t pay for us to travel from WV to Texas. One of our NICU doctors/director told the cardiologist in Huntington to find us someone so Ivy could get the surgery she needed. We were then transferred to DC children’s and they evaluated her and said she had 3 irreversible conditions in her heart, right and left pulmonary stenosis and sub-aortic stenosis. They were afraid to take her to surgery thinking she may not survive. I began praying more. By His stripes Ivy you are healed. I prayed this several times a day while touching her and thinking what I wanted God to heal. While in DC she received a tracheotomy and a Gtube for feeding. Once she healed from that we were transferred back to our local PICU for 4 more months. That August I asked our doctors to try one more time to get us to Houston. Insurance said no again. In the mean time our cardiologist, PICU doctor and social worker were also speaking with other hospitals. Cincinnati was now saying they would take her, but I was not accepting of this idea, due to their previous surgeon turning us down two times before. I asked to try AnnArbor Michigan (MOTTS). They were taking a while to respond. Our doctors were still pushing for Cincinnati. The new chief surgeon, Dr. Morales, had already heard of her and was willing to evaluate her for surgery. After gentle discussions with the PICU doctor and the cardiologist, I said I’d pray about it and if we didn’t hear from Michigan by that Friday we’d go to Cincinnatti. It was our last shot at surgery and I didn’t want to go to be turned down again. Friday came and Michigan called saying they were out of network and insurance wouldn’t pay. So God answered to the day and said lets go to Cincinnatti. We were transferred on September 3rd. A week later I was told they would fix my baby’s heart. She was 9 months old at that time. The day before her surgery, her surgeon Dr. Roosevelt Bryant, our hero next to God and Jesus, came in to talk to me. He was a giant of a man, 6-7 I believe. I asked him if he believed in God. He said yes ma’am. I began telling him our story and how we tried to get to Dr. Fraizer in Houston. He smiled and said that Dr. Fraizer had trained him!! Praise The Lord!! I also found out that the majority of the team was also from Houston!! God answered my prayers!! I also asked him about the stenosis that DC said she had and he said these “irreversible” conditions were not there. I know they were at one time. I saw the pictures from the cath report. He asked why I thought she had that. I told him about the report in DC. I said God fixed that. You fix her holes. He said he was worried how she would do considering she had trisomy 18. She was also his first trisomy 18 patient. I said it’s all going to work out the way it’s supposed to. He hugged me and said ok. I’ll see you in the morning. I was so happy! I got on my knees and thanked God for answering my prayers. I called my mom and she, Courtney, my brother and his two kids drove up that night. We prayed by Ivy’s bed the next day, October 3rd, she had her surgery. Ivy did very well. Dr. Bryant came out afterward and sat down, threw his giant hands up and said she did great!! Praise God!! He helped save Ivy’s life. We stayed in the CICU for two weeks and transferred over too the TCC unit where we were trained on her new home vent and worked through some other little issues that popped up… We left the hospital in Cincinnati 7 months later and came home for her first time April 2nd, when Ivy was 15 months old… No one will ever tell me that God does not exist!! He does!!… From what I’ve been told Ivy is the first trisomy 18 child to have surgery for heart repair at that hospital. I am so thankful for God putting everyone where they needed to be in our life and giving me the strength to not give up. I was with her 24/7 those 15 months. I would do it all again if I had to. Ivy has made me a better person, opened my eyes, softened my heart, yet toughened me up and made me a better believer in God… I will also say this. Be specific when you pray. I prayed to get my daughter to Houston. I didn’t include Texas. He did get us to Houston. It was Houston doctors in Cincinnatti, Ohio!! Praise God!! My little Ivy is still alive. She’ll be 3 years old on Christmas Eve. Statistics say children like her don’t live that long. God does not go by statistics… Thank you for taking the time to read our story. God continues to bless us and answer prayers for my little Ivy everyday.