Children's Hospital Colorado

Understanding TTTS: One Mother's Journey

During the first ultrasound in the OBGYN office, I feel sick and cannot fend off the nausea. “Let’s see how many are in there,” the ultrasound technician says as she begins the process. I honestly think the technician is still joking when she replies, “Oh, I see two.” I’m shocked, but the technician confirms I have two fetuses at six weeks along. Due to a history of pulmonary embolisms in my lungs, I’m sent downstairs to a maternal fetal medicine specialist, Dr. Shane Reeves. The doctor tells me that I have what’s known as a “monochorionic diamniotic pregnancy” – in which each twin has its own amniotic sac, but share a placenta.

Twins Kendall and Danika, 4 years old, wearing purple and hugging each other.

The news is not an immediate cause for alarm, but this type of pregnancy comes with complications. While my main worry until then was unending morning sickness, weeks later the real cause for concern emerges: I’m diagnosed with twin-to-twin transfusion syndrome (TTTS). At my 19-week ultrasound, Dr. Reeves asks me to turn to the right and then to the left. I begin to worry when he pauses and says, "I will be right back." When he returns, he escorts my husband and me into his office. With concern on his face and a piece of paper in hand, he sketches out a devastating prognosis: In twin-to-twin transfusion syndrome, one twin (called the “donor twin”) is losing fluids to the other (the “recipient twin”) due to an anomaly with the blood vessel connections in the placenta. While one twin is increasingly tightened in an ever-shrinking sac, the other sibling faces an excess of fluid.

If untreated, we are told, the risk of death for both twins is high.

TTTS care with Dr. Timothy Crombleholme

While the news is horrible, Dr. Reeves tells us that Dr. Timothy Crombleholme, a fetal surgeon specializing in TTTS treatment, is relocating to Children's Hospital Colorado, and the two have already discussed today's ultrasound. The next step is an immediate fetal echocardiogram at Children's Colorado, where it is confirmed I am in the early stage of TTTS. Per Dr. Crombleholme's plan of care, the treatment calls for an amnioreduction, removing excess fluid around one of the twins.

I walk into the University of Colorado Hospital (partnered with Children’s Colorado) on Christmas Eve morning 2011, nauseous, nervous, scared but ready. The recipient twin, Kendall, has a dangerously high level of fluid that could lead to heart failure, while Danika (the donor twin) barely has enough. After a successful procedure with Dr. Reeves, the symptoms are alleviated, though my developing babies are still sharing connections through the placenta. The potential for TTTS to return remains.

While I know this is a bad idea due to all the added fear, I Google “Twin to Twin Transfusion Syndrome.” With luck, I come across the Twin to Twin Transfusion Syndrome Foundation, a site dedicated to raising awareness and connecting moms going through this ordeal. I post my questions: “What am I up against?”; “Am I with the best group?”; “What are the best methods of treatment?” and “Are we heading in the right direction of care?”

Families on the site help me answer these questions and point to doctors who showed the best outcomes. The sites arms me with questions to ask my doctors, so I feel more educated and prepared. I learn the importance of a quality maternal fetal medicine doctor, and how often I should be seen by the physician. The numbers specifically important to watch in a monochorionic diamniotic situation are cervical measurements and sudden weight gain for the mother. I learn that as a mom diagnosed with TTTS, it is important to be an advocate and to push to be seen at a top-tier facility, while fighting for the best resolve and keeping hope.

TTTS returns, forcing a premature delivery

I encounter no further issues after having a few follow-up ultrasounds, and so I schedule to meet with Dr. Crombleholme. I want to put a face with a name, and especially to have a plan of action should TTTS come back. And at 27 weeks, TTTS came back with a vengeance.

I remember the same instruction from Dr. Reeves, "Kristi, turn to the right and then to the left." My husband knows right away as he sees an enlarged bladder on one of the babies. I see the bladder and the next thing I remember are tears, with the news delivered that the TTTS has progressed to a worse stage. Dr. Reeves directs us straight to the labor and delivery floor to check in. "I will reach out to Dr. Crombleholme as you head to the hospital," he tells us as we leave.

Side by side pictures of Kendall and Danika at Children's Hospital Colorado being treated for Twin-to-Twin Transfusion Syndrome.

An ultrasound finds the babies have switched roles. Danika is now the recipient, while Kendall has taken on the donor role. At the hospital, I am informed that I am past the stage that a laser treatment can be performed. The plan of care is for serial amnioreductions, monitoring both babies – especially the hearts – and delivering via C-section when necessary.

During this time, I feel extreme anxiety and fear, but know this is out of my hands. I pray and leave it to God, for these are his children and not mine. I find support in Mary Slaman of the Twin to Twin Transfusion Syndrome Foundation. Laura Ballard, a fellow TTTS mom with two survivor twins, and I spend a great deal of time researching and advocating. Within five days I reach Stage 3, in which Danika is at high risk to suffer partial heart failure. Dr. Crombleholme prescribes nifedipine, which recovers the right side of her heart. I go through a few more amnioreductions, but by 29 weeks the TTTS has progressed, with reversal blood flow backed up to the umbilical cord.

The situation becomes so dire our twins must be delivered prematurely. I am prepped for a C-section, and in what seems like an out-of-body experience, I deliver beautiful identical daughters one minute apart: Kendall, tightly wrapped in her sac, and Danika, fully nestled in a sac of fluid that bursts upon delivery.

A TTTS treatment ambassador

Today, I am a mom to two healthy 4-year-old girls, and I keep in contact with other moms who have gone through the same experience. I look back and, yes, wish the pregnancy would've been different. I wish it would have been normal, with no complications or issues. Instead, I am at peace knowing that I had a great team surrounding me during what was one of the most trying times of my life.

Kendall and Danika hug each other happily after surviving twin-to-twin transfusion syndrome.

I know that the Colorado Fetal Care Center is one of the top TTTS facilities in the nation. There are a few select TTTS specialists who have great numbers when it comes to statistics and outcomes. Dr. Crombleholme is one of those doctors, and we are grateful for his expertise, and the opening of the Colorado Fetal Care Center.

And so I share my story to other moms. And listen to them share theirs. They need to know that there is help, and that there is hope.

Websites to help TTTS moms