Beating the Odds of Twin-to-Twin Transfusion Syndrome

In 2008, Ebru and Casey Middlebrooks were overjoyed to learn they were expecting. However, there was a surprise in store. During their third ultrasound, the couple learned Ebru was pregnant with twins.

“It was quite shocking,” Ebru recalls. She knew instinctively that being pregnant with multiples could mean more complications, so her happiness was also mingled with worry.

One somewhat unusual aspect of Ebru’s pregnancy was that her twins shared a single placenta. Typically one placenta supports a single fetus—and when twins share, their umbilical cords implant anywhere, so it’s possible one twin receives less blood flow and nutrition.

Middlebrooks momNone of the medical professionals treating her had warned her of any complications of babies sharing a placenta, presumably to ensure she didn’t worry needlessly during her pregnancy. Additionally, as Ebru notes, because medical personnel deal with certain situations all the time, they may forget that some patients are going through experiences for the first time and don’t know what to look for. For Ebru, one key takeaway from her experience is that it’s best if medical personnel are upfront and informative about potential complications and symptoms to watch for. “I personally believe that knowledge is power,” she says.

During her pregnancy, Ebru taught preschool—and thankfully, a student’s mother warned her to watch for complications. Thanks to her, Ebru was able to research possible issues that can arise due to multiples sharing a placenta, including twin-to-twin transfusion syndrome (TTTS).

In the beginning, Ebru’s pregnancy progressed typically, with no sign of problems. But when she was 18 weeks along, she began experiencing contractions. Since it was her first pregnancy, she wasn’t completely sure she was having true contractions. However, because of her research on TTTS, she was quite worried that something was wrong.

The next morning, she saw her OBGYN and underwent an ultrasound. The scan revealed that there was an uneven amount of amniotic fluid between the two sacs—a sign of TTTS. “I was devastated,” Ebru recalls. “I felt like the only person this was happening to in the whole wide world.” Her doctor referred her to a high-risk pregnancy specialist during which her gut feeling was confirmed. It was twin-to-twin transfusion syndrome.

This condition means that essentially, one twin “donates” blood to the other—meaning the donor twin has decreased blood volume while the recipient is overloaded. This blood imbalance puts both the donor twin and the recipient twin at risk for health issues and even death.

“Pregnancy is supposed to be a time of joy and excitement. So when I was diagnosed with TTTS, I felt so alone, like I was the only one on earth this was happening to! Expectant parents need to know that complications during pregnancies arise all the time and that there is help. There are many experienced and wonderful Fetal Care centers around the country and organizations like Fetal Hope Foundation are willing to lend a hand in any way they can to those who are having a difficult pregnancy.”

After her initial diagnosis, life changed. Ebru was in constant pain and continued having contractions due to the increased fluid in one of the amniotic sacs. She also had to undergo treatment for TTTS.

The most effective treatment option is a laser surgery called fetoscopic laser photocoagulation. During the procedure, the doctor makes a small incision in the mother’s abdomen in order to sever all the abnormal blood vessel connections, permanently disconnecting them.

Only certain specialists around the country perform this surgery. UAB referred Ebru to Cincinnati Children’s Hospital’s Fetal Center. At 21 weeks along, she underwent the surgery. Ebru and Casey stayed in Cincinnati for two weeks after the procedure.

To the couple’s dismay, after the surgery, doctors indicated that they didn’t expect the donor twin to survive the pregnancy. Amazingly, Ebru says, “he kept holding on and kept growing in utero right alongside his brother.”

After returning to Birmingham, Ebru spent the remaining 12 weeks of the pregnancy on bed rest. At 35 weeks, she gave birth to her boys: Aiden and Grady. When they were born, both were over 4 pounds.

Middlebrooks dad “I felt so much better after I gave birth to my boys, the roller-coaster ride of my pregnancy was over,” she says. “I was just ready to take my babies home with me and take care of them!” However, the twins had to stay in the NICU for a month. Ebru had a tough time leaving them at the hospital after she was discharged. Bringing them home was a joyful occasion.

Grady, the donor twin, has cerebral palsy due to TTTS. Ebru isn’t a fan of the term “special needs.” “Having twins gave me a great perspective about how every child has some sort of a special need,” she says. “But I do have one child that has extra needs, that requires extra time, effort and patience.”

Today Aiden and Grady are 9 years old and their difficult experience before birth hasn’t hampered them in the slightest. “My boys are the best,” Ebru says. “Aiden and Grady are the most loving and sweet and kind little boys ever.” Even their teachers and friends remark on what a joy the boys are to be around. “That makes me feel wonderful,” Ebru says.

As every parent knows, raising children can be a daunting task. But Aiden and Grady bring unconditional love and unmeasurable joy to their parents. The boys make a wonderful pair: Kind and caring. Aiden loves his brother and has endless patience and understanding for him. And sweet, happy Grady never complains about anything, works hard to overcome all his challenges, and eagerly tries new things. He also adores his brother and happily tries to keep up with him. Another factor in their happy family: “It helps that my husband and I are a great team,” Ebru says.

For the Middlebrooks family, the future looks very bright. “I have very high hopes for my boys,” Ebru says. “They already overcame so much and survived. They are such a joy to be around and I know that they both are here for a reason.”

What Is Twin-To-Twin Transfusion Syndrome?

Middlebrooks twinsIn a typical pregnancy, each baby has his or her own placenta. However, sometimes during a multiple pregnancy babies will share a single placenta. In 10 to 15 percent of these cases, an imbalance in circulation can develop, and one twin transfers blood to the other. This is called twin-to-twin transfusion syndrome (TTTS).

Due to this condition, the donor twin has decreased blood volume, slow growth, and decreased urination. The minimal urine output means this twin may have low (or even no) amniotic fluid. The recipient twin, on the other hand, receives too much blood. This causes strain on the heart (even the risk of heart failure) and increased urination, which leads to too much amniotic fluid.

Here are some facts about TTTS to keep in mind:

  • TTTS is based on random events, such as how the placenta is shared by the twins. It’s not genetic or hereditary, and it’s not caused by anything an expectant mother does or doesn’t do.
  • TTTS can occur at any time during pregnancy.
  • If TTTS goes untreated, the twins will die in 70 to 80 percent of cases. Treatment is key!
  • Survivors of TTTS may have injuries to the kidney, heart, and/or brain.

Parenting Children With Different Needs

Middlebrooks magic kingdom 600All children have different needs, personalities, strengths, and weaknesses. Juggling different types of needs can be a challenge, but one that comes with endless rewards. Here are a few tips to keep in mind:

  • As a parent, it’s important to give each child special attention and one-on-one time. A quick meal out, a trip to the playground, or snuggling on the couch for storytime can be a great way to connect.
  • Let each child pursue their particular interests and strengths. One might enjoy sports while another prefers making music.
  • Sibling conflict, rivalry, and jealousy are very common. Listen to your children, and allow them to share their feelings without fear of being judged.