TTTS Parent Stories: Abbey and Kaleigh
We were so excited because twins don't run in our families and we weren't on fertility medication. After the shock wore off, we decided on Kaleigh Marie for baby A and Abigail Barbara for baby B.
Over the next four weeks I became huge, had horrible back pain, trouble breathing, and an extreme pain under my right rib cage. When we went back for our 22 week check the doctor scheduled another ultrasound for later that day.
The next day the doctor called us in for a meeting and we were told that both of our girls wouldn't make it. He recommended a maternal fetal group and scheduled an appointment for the next day. On October 9, 2001, after an hour long ultrasound we finally heard the term TTTS and stuck twin syndrome.
At first the doctor's thought our girls' were in one sac, but after looking for 45 minutes we found a very thin membrane between them. We had wonderful doctor's, but we were never told how very sever TTTS is when detected this early in pregnancy.
We were told our one option was to have some of Kaleigh's amniotic fluid drained in hopes that it would allow Abbey to drop.
Over the next 3 weeks they drained her fluid 3 times, but on November 6 we lost our battle for Kaleigh. That afternoon we had gone in for a follow up ultrasound and they couldn't find her heart beat. My husband and I looked at the doctor as if he were speaking a foreign language.
We had never thought we would lose one of our girls...as we were doing everything that we could to save them.
I was immediately admitted onto the Perinatal floor at the hospital for continuous monitoring, daily ultrasounds, bi-weekly blood work, and medication for contractions. When first admitted, Abbey was only 13 ounces and I don't think the doctors expected her to make it. Kaleigh was 1 pound 11 ounces when we lost her to this dreadful disease.
The first week of ultrasounds detected fluid around her heart, brain, abdomen, and lungs, along with her kidney's appearing bright in color. We were told to just wait and see what happens to the fluid, and our miracle happened a week later when the tech couldn't find any.
I was so relieved to see the look on her face of disbelief.. I knew our Abbey was going to be just fine from that point on. She finally dropped from under my rib cage on Thanksgiving, our blessing had been heard. At that point I was put on every 4 hours monitoring and medication to regularly calm my uterus down.
After being in the hospital for 6 weeks, they sent me home on December 3 to wait for our girls' arrival. We were still going in for weekly ultrasounds and blood work and I was to maintain strict bed rest. Never in my life did I ever think I would have to stay in bed for 12 weeks...but whatever it took I was willing to try it.
On December 18, 2001, my blood work came back extremely high and an emergency c-section was ordered. All along they had been checking my blood for signs of infection, hoping I could get to 32 weeks before they had to take the girls'. Our wish came true because the 18th was 32 weeks exactly. I had already been given 3 rounds of steroids to help mature the lungs, so I was ready to go.
At 9:44pm Abigail Marie Barbara was born, weighing in at 2 lbs 7.4 oz and 14 inches longs.
I don't remember the delivery, but my husband told me they showed me both my Abbey and Kaleigh. The only thing I do remember is Abbey crying and I said a thank you to God for that.
They immediately took Abbey up to the NICU to evaluate her. We really hadn't talked about what we were going to do about Kaleigh, but everything fell into place on it's own. I decided that I couldn't handle seeing Kaleigh, and I now wish that I had. But I Know that someday I will remember the birth of my girls'... this is just my minds way of dealing with it.
We decided to have Kaleigh cremated as we always want her with us.
Abbey made it through the night breathing on her own, but had to be put on the vent early the next morning as she was beginning to tire. She also suffered a grade 2/3 IVH brain bleed that day and has since been disgnosed with Cerebral Palsey.
She was only on the vent for two days and was then placed on oxygen .She had a very uneventful hospital stay and came home, without any oxygen or monitors, after 6 weeks.
Abbey came home on February 2, 2002, weighing in at 4 lbs 10 oz and extremely healthy.
She is now 9 months old and weighs 13 pounds and has the brightest smile that I have ever seen. She has been in physical and occupational therapy since May of 2002, and is making great strides.
We have since found out that CP is some what common in kids who have been affected with TTTS. We don't know what her future holds for Abbey, but we do know that she will but she is already extremely blessed with an angel up in heaven to watch down on her. We have been told that her CP is not severe but pretty much middle of the road. And we will do what ever we have to, to better her chances in life. We are extremely fortunate that Abbey is so very healthy, happy and here. I miss my Kaleigh every day, but I know that those feeling will never change.
God works in mysterious ways and he has a plan for my girls'...he just chose to keep holding one in his arms.
I just want for this dreadful disease to not affect one more baby.
Lisa, Jimmy, Patrick, Abbey and angel Kaleigh Cahill
Nashville, TN
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