Twin to Twin Transfusion Syndrome Foundation Banner
International Office
411 Longbeach Parkway
Bay Village, Ohio 44140 USA
Help After Pregnancy Photo

NICU Support
Special Needs Support
Bereavement Support

Faith and Hope

Our story began on March 24th, 2002. In the middle of the night, I was having a backache and experiencing mild discomfort in my abdomen area. We had no reason to think that I was experiencing anything other than the normal aches and pains associated with being pregnant. To be safe, we called the doctor the next day. Thank God we did.

Although the doctors could not immediately determine why, they quickly realized that I was having frequent, but mild contractions. We were only in the middle of the 22nd week of pregnancy, expecting identical twin girls. The plan was to immediately stabilize me and the contractions, prevent me from going into pre-term labor, and then determine the cause of the early contractions.

That evening, we met with a doctor who explained that the cause of the early contractions was due to a medical syndrome called twin-to-twin transfusion syndrome. In the simplest of terms, the blood flow to the babies was not proportional. McKenzie was receiving more blood than she needed and Faith was receiving less. Both situations were putting overdue stress on the babies-too much blood caused stress on the heart of McKenzie, and the lack of blood to Faith was causing her to be malnourished and to develop at a much slower rate than McKenzie. All the information that was given to us by the doctor seemed so overwhelming, and since TTTS is quite rare, the doctors were not exactly positive in what treatment would be the best for the girls and me. That is when we decided to get more information from the TTTS Foundation.

My husband quickly placed a call to the TTTS Foundation for guidance and education. We were so comforted in knowing that the person on the phone knew EXACTLY what to say to us because she had been there before some years earlier with her sons. We were overnighted a package of information regarding TTTS and felt better about our chances of delivering two healthy babies.

The next day, the doctors told us of all of our options. First, we could abort the pregnancy (not even an option for us). Second, we could have numerous amniocentesis done, in which they would drain fluid off of my belly in order to prolong the pregnancy. Finally, they mentioned a laser surgery that would manipulate the flow of blood to the babies. We were informed that the laser surgery was very delicate, and there were only a handful of doctors within the U.S. that perform the surgery. This option appealed to us the most, and we were mentally ready to make the trip to wherever we needed to go in order to save our girls. Unfortunately, my body was in no physical condition to be flown across the U.S. for the surgery. I was having too many contractions and the doctors were very concerned that if I were to fly, I would be at risk for pre-term labor.

So, my only option at that point became the amniocentesis procedure. For the next few weeks, I had numerous needles in my belly draining off the excess fluid surrounding McKenzie. The procedure seemed to be working because I had made it to the 24th week of pregnancy, and the contractions seemed to have finally disappeared.

Unfortunately, things took a turn for the worse. On Friday, April 12th, we found out via ultrasound that Faith had passed away in the womb due to anemia and dehydration. We were devastated and felt like the wind had been taken out of our sails. We were so scared for McKenzie, who was still clinging to life within my womb.

On April 14th, 2002, two days after finding out that we had lost Faith Emilie, McKenzie Faith Elizabeth came into the world weighing in at 1pd 5oz. She was immediately rushed into the NICU, where she would spend the next 110 days growing and recovering.

McKenzie was one of the smallest babies the doctors had ever dealt with in the NICU. At her lowest weight, she went down to 11 oz. She fought and struggled to survive minute by minute, hour by hour. Since she was born so early, her lungs were the main issue of concern for the first months of her life. She was put on a ventilator for a month, C-PAP for another month and then eventually required supplemental oxygen. She had a grade II brain bleed, BPD, Retinopathy of Prematurity, battled numerous infections and had to have 3 blood transfusions. We rode the preemie roller coaster day in and day out, visiting every chance that we got.

The day FINALLY arrived when we got to take little McKenzie home with us. McKenzie came home weighing a little over 6 pounds and requiring supplemental oxygen. We were a little intimidated by the oxygen machine, but it quickly became part of our furniture! Today, McKenzie is a healthy 18 month old who is now learning to walk on her own. We count our blessing everyday that the doctors, nurses, our family, friends and the TTTS Foundation were there for us in our time of need. McKenzie wouldn’t be here without them.

Hope 1


Jon and McKenziel

Father with McKenzie

Hope close up


The TTTS Foundation In The News


>

Learn about TAPS- MUST do MCA dopplers on all pregnancies

A form of TTTS, TAPS can occur after laser surgery or during a monochorionic pregnancy with no signs of TTTS or problems.
>

Updated List of Questions

Questions to Ask at Every Ultrasound. Ultrasounds Must Be Weekly Starting at 16 Weeks.
>

Raise Donations on Facebook

This is a fantastic and easy way to support the fight against TTTS and bring help and hope to families
>
World Awareness Day - Dec. 7 2010

TTTS Walk for the babies

Official TTTS Foundation Events
Copyright © 1997-2018 The Twin To Twin Transfusion Syndrome Foundation. All Rights Reserved
411 Longbeach Parkway, Bay Village, Ohio 44140 USA | 800-815-9211 |