Thursday, March 3, 2011

My TTTS story....

As most of you know, the reason Elijah and his brothers were born early is a disease called Twin to Twin Transfusion Syndrome (TTTS), here is some information on TTTS that I got from the TTTS foundation web page, a great resource!

*Twin to twin transfusion syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.

*TTTS affects identical twins (or higher multiple gestation's), who share a common monochorionic placenta.

*The shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulations of the twins.

*The common placenta may also be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive

*The events in pregnancy that lead to TTTS - the timing of the twinning event, the number and type of connecting vessels, and the way the placenta is shared by the twins are all random events that have no primary prevention (see section on The Monochorionic Placenta), is not hereditary or genetic, nor is it caused by anything the parents did or did not do. TTTS can happen to anyone.

My Story......

Elijah, Lucas, and David
We found out in 2008 that we were expecting triplets. We were shocked and surprised, but soon began to anticipate the arrival of our identical boy’s. At first the pregnancy seemed to be going well. I was hospitalized a few times for extreme nausea, but otherwise things looked good.

Since my pregnancy was considered high risk I was sent to a specialist. During my 21 week visit it was noticed that one baby had an excessive amount of amniotic fluid, his brothers still looked okay so I was sent home on bed rest and an appointment was made for the following week.

During my next appointment the doctor discovered that the babies were showing signs of Twin to Twin Transfusion Syndrome a disease of the placenta that affects identical twin (or higher order multiple) pregnancies, the shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulations of the twins. The common placenta may also be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive.

My doctor immediately contacted a specialist in Florida who does laser surgery to try and correct the problem. Within days we were driving the 12 hour trip to Florida, I was supposed to lie down the whole way due to a shortening cervix and the fear of premature labor. I spent that whole trip thinking I was going to give birth on some interstate between Virginia and Florida. After two days on the road we made it to Florida, I spent the entire day after our arrival being tested, and having multiple ultrasounds. Finally the doctor came to me and gave me several options; the one we eventually chose was laser surgery.

I barely slept the night before the surgery, we went in early the next morning and I was prepped for the procedure. I was kept awake during the whole thing because it was better for the babies. I remember being in a lot of pain but still getting excited when I saw the babies on the T.V. screen used to help the doctor guide the laser. Surgery was declared successful and the doctor said my cervix was going back to normal so a scheduled cerclage (stitch in the uterus) was cancelled. I was taken to recovery and then to the room where I was to spend the night. That night turned into a week because a few hours after surgery the membranes around baby A (David) ruptured, causing his cord and foot to prolapse into the birth canal.

I was rushed to labor and delivery where it was decided to try to hold off on delivery of baby David to give the other babies a chance, as I was only 23 weeks at the time. The week I spent in the hospital was a blur, I remember feeling David’s cord pulsing and his little foot wiggling as he tried in vain to be born. He held on for an entire week and passed away shortly before I was taken in for an emergency C-section. Baby B and C were delivered extremely premature at 24 weeks 0 days and were rushed to the NICU.

Lucas who weighed 1lb 5oz at birth fought for survival, he was such a strong and brave little boy. He was born fighting and he did not know how to do anything else but fight. He never gave up, but at one month of age it was discovered that NEC (a infection common in preemies) had destroyed his bowels. The NICU doctor told us this was not compatible with life so we held our baby while the doctors took him off of his ventilator. He died as he had lived, fighting. He fell asleep in the arms of his parents. Lucas and his brother David were both little warriors and they will always be in our hearts. They are survived by triplet brother Elijah, he spent four months in the hospital, has had multiple surgeries. At two he was diagnosed with mild Cerebral Palsy.

This story as well as others about TTTS can be found here

Information and help for TTTS can be found here


Lucas in the NICU



Michele said...

Your sons are beautiful. This story brought tears to my eyes. As you talked about David, it reminded me of my son, Alexander. He was breach and one of his legs had slipped down.

I still miss him, and his older twin siblings, every day, and am grateful for the sweet twins I have the pleasure of watching grow up now. But it is so hard to not have them all here, knowing that my oldest twins would be 3, Alex 2, and these sweet little ones.

Sending hugs...

Mom said...

What a heart-breaking story! How did you manage to get past your grief? I'm so glad you still have a baby to hold and remember the others. Thanks for stopping by my blog and deciding to stay for a while.

Princess Amy said...

I am from blog frog and have been reading your blog. I am so sorry for the loss of your two little guys but rejoice with you in Elijah's life and progress.

I have a little girl who experiences Autism. Seems like a drop in the bucket compared to what you go through.

Hugs to you

SarahB said...

I have been searching the web for story like yours. For hope. Although there is tragedy in your story there is also hope. You have a beautiful little boy. Yesterday, after a week of early pregnancy complications, an US showed that I'm carrying a set of spontaneous identical triplets. Two have already vanished, as their yolk sacs are empty and the third is measuring two weeks behind schedule. The doctors didn't smile once during our visit and ending by telling me that I would probably loose the third too. While, I know these things happen for a reason and am doing surprisingly well with the thought of miscarry ing, a part of me feels like one little bean is fighting for life. Just hoping. Did your little guys measure behind at all in the beginning? Thank you for sharing your story. You have really helped me process what the doctors thought was 'abnormal'.

Denise said...


Wow, I just saw this! I'm so glad this blog gave you hope! I hope everything turned out well for you!!