TTTS Awareness Month: Landon and Luke’s Story

TTTS Awareness Month

December is a very special time of year in our house. Of course, the holidays are coming up, but in our family the month means something else. December is TTTS Awareness Month.

Twin to Twin Transfusion Syndrome caused the premature birth of my twins. 

TTTS, according to the TTTS Foundation, is: “…a disease of the placenta (or afterbirth) that affects identical twin pregnancies. TTTS affects identical twins (or higher multiple gestations) who share a common monochorionic placenta. The shared placenta contains abnormal blood vessels which connect the umbilical cord and circulations of the twins.”

While it is rare, it can effect anyone pregnant with multiples that share a placenta. It isn’t hereditary or caused by anything the mother does. TTTS is just a random occurrence, just as identical twin pregnancies.

Why December?

TTTS Awareness Month was started by the founder of the TTTS Foundation. Mary lost one of her precious twins because her doctors were not educated about TTTS. She lost Steven to this disease, but made him and his brother, Matthew a promise to fight to end TTTS by raising awareness. 

Her twins were born on December 7, which is also International TTTS Awareness day.

How we Help

Just like Mary, I want to educate and spread awareness about this deadly disease. So, through the end off the month, and many more Monday’s to come, I will be sharing stories about TTTS.

Today, I’m so honored to share my friend Amanda’s story. I met Amanda through a Facebook support group, and also got to meet her in person at the 25 anniversary of the TTTS Foundation at the Twins Day Festival in Twinsburg, OH.

Not only is Amanda a mother of some amazing twin boys, but she is an advocate for TTTS Awareness and supporter of the TTTS Foundation.

Please meet Landon and Luke, as told by Amanda during TTTS Awareness Month.

1.Tell us about your twins.

Landon and Luke were born April 14, 2011 at 34 weeks. Weighing in at 4 lbs 6 oz (Landon) and 3 lbs 9 oz (Luke). Landon was our recipient and Luke was the donor. They spent 7 weeks in the NICU. 

2.When did you find out you were pregnant with twins? Diagnosed with TTTS?

We found out at 6 weeks we were having twins, and it was verified again at 8 weeks. We were diagnosed with TTTS at 16 weeks 4 days. 

I had no clue that TTTS even existed. I went to a regular OB at first, and he straight told me that he had confirmed I had one placenta. He said he knew that complications could arise, one being TTTS  and he was not comfortable nor capable of continuing my care, and sent us to a specialist at a neighboring hospital.

That specialist diagnosed the TTTS and then sent us to one of the top doctors in the TTTS community. All 3 of these doctors were within 30 miles of each other, so in that case I was very fortunate with my commute to and from the MFM.

3. Tell us about your pregnancy.

I had normal OB appointments at 6,8, and 10 weeks. Referred to a specialist at 14, diagnosed at 16 weeks, and then I was referred to our TTTS specialist and MFM.

I had told the specialist that my belly was rock hard, and I was very uncomfortable. He did my sonogram, and soon after noticed that Luke was stuck. We had gone from no visible signs at our previous sonogram to stage 2/3 at diagnosis. He checked my cervix to make sure all good was there and then swiftly left the room to call the MFM.

We saw the MFM (Dr. Wiener) the next morning(Tuesday), then had surgery on Thursday. We had surgery at 17 weeks (on December 16th, 2010). (Laser surgery is performed to separate the connecting blood vessels in the placenta)

I had weekly visits from 17 weeks to 34 weeks. Luke didn’t pass the NST so delivery was scheduled for the next morning after our last appointment.   I worked light duty up until 2 weeks before delivery, and only put on mild best rest once. 

4.How are your boys doing now? How is your family?

There were no abnormal complications in the NICU. Just breathing and feeding issues to get through. Luke was born with 10% of his hemoglobin so he had to have a blood transfusion, but ended up going home before Landon did. After leaving the NICU they have been healthy “normal” babies/kids.

The boys are now in 1st grade and excelling! They are about a 1/2 lb different in weight and 1/2 in in height. They are big brothers to Lily(5) Jack(3). They love fishing, boating, camping, tinkering with a small engine we have, building things with legos and reading.

Our family is always on the go so you could never guess that they had such a rough start at birth. 

5.What advice would you give to someone newly pregnant with multiples?

I would tell (and have told) expecting twin mothers to follow your gut! You are the only advocate those babies have and if something doesn’t feel right, be their voice. My MFM told me that he would rather see me come in for something minor, than stay home and it be something major.

Another thing is if your OB is treating your pregnancy like you are carrying a singleton, then you should search for a different Doctor. I know moms that had two sacs and one placenta and were simply monitored, and then delivered healthy babies at 37 weeks. I also know moms that were oblivious to the chaos inside their womb, and they can only carry the memory of their babies in their hearts/minds.  

My TTTS journey taught me so much and connected me with life long friends from around the world. 

TTTS Awareness Month Continues

Thank you so much to Amanda for sharing her beautiful family and strong boys with us. 

TTTS Awareness Month is just one important step to saving babies. Until there is a cure, and all doctors provide the best care, we will all keep fighting.

You can help by sharing this post. 

For more information, please visit the TTTS Foundation.