Lucas and Matthew's Story
Lucas and Matthew's Story: Overcoming TTTS, PPROM, Abruption and Renal Failure.
I found out that I was pregnant when my 3rd son was only 3-1/2 months old. Needless to say, it wasn't planned. I knew right away it was twins -- I got huge fast and I just "felt" like there was more than one. It was confirmed on my first visit to my perinatologist at eleven weeks. I was expecting identical twins who shared a placenta.
When I was 19 weeks along, I went in for a level 2 ultrasound. During the ultrasound, the perinatologist informed me that my twins were suffering from twin-to-twin transfusion syndrome. The recipient twin had WAY too much fluid, and the donor twin was "stuck" with the amniotic sac literally saran wrapped around his little body. That doctor asked me point blank if I would consider terminating the pregnancy: I told him if God wanted to take my babies he could, but I wasn't willingly sending them back. He then sent me to see his partner, my primary perinatologist, who happened to be working as the ER doctor in the L&D triage at the hospital. After performing another level 2 ultrasound, my doctor confirmed that we had TTTS and took me to a private room where he explained what TTTS is and what my options were. He was obviously upset that I had developed this, and explained that at best I had a 67% chance of one twin surviving if I did serial decompressive amniocentesis, a 75% chance of one twin surviving if I had surgery, and a >80% chance of one twin surviving if I chose to ligate the cord of the donor twin, thus sacrificing him to save his brothers life. It was the worst day of my entire life!! I left the hospital with the knowledge that the odds were I would lose one, if not both, of my babies.
When I got home, I immediately began researching everything I could find on TTTS. Luckily, the TTTS Foundation website had contact information for Dr. Julian De Lia , a specialist in this disorder. I called and left a message for him on a Saturday, the day after we were diagnosed. He called me back on Sunday and told me that it was imperative that I be on complete bedrest and that I drink Boost High Protein 3 times a day. Of course, I started on the Boost HP immediately and I tried to stay down as much as possible, which isn't easy when you have a 6 month old baby.
On Sunday, October 24, 2004, nine days after we were diagnosed with TTTS, I woke up in the morning with the feeling that "something" was happening. I wasn't having contractions -- I just knew my body was changing and that I needed to see my doctor. I called him (luckily, he was again working triage at the hospital) and I went into see him. I am so glad I had the sense of change -- he discovered that I had so much fluid in the recipient twin's sac that I was starting to dilate. It was advised that I have an amniocentesis in order to stop imminent labor. I was admitted to the hospital, started on a Magnesium Sulfate drip, and the amniocentesis was done. We removed 750cc of fluid over 20 minutes. It was very painful and very scary. Once the fluid had been removed, the doctor left and I was put on a monitor to see if contractions would start. Fifteen minutes after the amniocentesis was done, I felt a huge gush of water and immediately knew my amniotic sac had ruptured. I was 20 weeks 5 days pregnant. The doctor came back in and was very apologetic. He knew, and I knew, that this was most likely the end of my pregnancy and my precious twin boys. He prayed with me and we talked about miracles. I remember him telling me that the Bible says "And I shall be a light unto your feet" and explained that God was a light to our feet so that we wouldn't see where we were going, but He would show us the way if we had faith to follow. Before this conversation, I didn't even know he was a Christian. He told me that if my boys survived, he would write them up in the medical journal -- I know he was just trying to be kind and never expected them to make it.
The next few days were a blur. My primary perinatologist visited and was very supportive but realistic about what our chances were. His partner (who had delivered my son 6 months before) came in and told me with tears in his eyes that he and his wife were praying for me and that he was so sorry that this had happened. I have a wonderful pastor who came and visited me, and I spent a lot of time praying for acceptance of what God's will was in this situation. I never gave up hope, but I knew the odds were not good.
For some reason, my body just never went into labor, I never developed an infection and my babies continued to grow and thrive. We were all praying that I would make it to 24 weeks so the babies would have at least a slight chance. I had multiple small abruptions and twice I was transferrred from the perinatal special care unit to labor & delivery due to large bleeding episodes. At 25 weeks, the amniotic sac on twin B ruptured. I was leaking so much fluid, I literally used a bath towel as my pad. Everytime we thought that delivery was imminent, I would stabilize and we would continue watching and waiting. We ended up doing that for 8 weeks 3 days.
When I was 29 weeks along, the doctor decided that there had been too many episodes of bleeding, the babies were having drops in their heart rates, and my heartrate was over 120. We were all afraid that if they didn't take the twins, something catastrophic would happen to them. So we scheduled me for a c-section. My twins were born on 12/21/2004, one minute apart. First came Lucas, my recipient twin, weighed 2 lb. 12 oz. while Matthew, my donor, weighed 2 lb. 7 oz. They were immediately transferred to the NICU.
It's been a long road for them. They were both born with total kidney failure, Lucas's resolved in 3 days but Matthew's took 3 weeks until we felt he was out of the woods. Lucas continued to need oxygen until he was 8 weeks old. Matthew developed a severe bacterial septicemia from his PICC line. Lucas had to had surgery to repair a right sided inguinal hernia. The boys are now followed by a team of doctors but so far their development has been normal. It's funny to me now to look back and realize that I never once worried about their lung development despite their early rupture. I've been told they could suffer from health issues in the future, but I'm taking my doctors advice: I'll let God be a light unto our feet and I'll trust where He leads us. It's been a roller coaster ride but I am so grateful that they are alive and healthy. I am not able to look at them without realizing what an incredible miracle they each are. I know there is a purpose for their lives that is much greater than I could imagine. God has been so gracious to me and I know that I am the most blessed woman in the world to be their mommy!!! Sometimes I wonder why my sons had to go through this. They faced so many fatal diagnoses and survived. It has changed my life dramatically and I am humbled by what this experience has brought to my family. I believe my boys have a purpose, that they are meant to give hope when there is none. Their story has brought many people into our lives and given me a greater understanding of what it means to give unconditional love and support. I will forever be grateful not only for the opportunity to help bring these little boys into the world, but for the opportunity to share their story. They are my little miracles!!
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.