Receiving a diagnosis of twin-twin transfusion syndrome (TTTS) can be overwhelming. The mother faces the possibility of fetal surgery and modified bed rest afterward. Her unborn babies’ lives are typically in serious danger. At this time, families usually are experiencing a range of strong emotions including anxiety, worry and fear.
At the Cincinnati Fetal Center, we see about 120 families each year who receive a TTTS diagnosis. Most families who come here for evaluation of TTTS have already heard of the condition from their OB/GYN or an MFM (maternal-fetal medicine specialist) they’ve previously seen. When they arrive, they want to know two things: (1) Is this really twin-twin transfusion syndrome?, and (2) If so, is it at the point where they’ll need surgery?
A diagnosis of TTTS could mean fetal surgery and/or medication, as well as close monitoring and follow-up for the remainder of the pregnancy. If surgery is indicated, most of the time the surgery needs to be performed rather quickly—within a day or days—to save the lives of one or both babies.
We typically see two reactions from families after they hear a definitive diagnosis of TTTS. Some struggle with the decision whether or not to undergo surgery. Others find comfort in learning about the treatment for the condition.
Whatever their reaction to the news, fetal surgery is a decision that can have serious implications for both the babies and mother. Here are my suggestions for making this difficult time a bit more manageable.
Twin-Twin Transfusion Diagnosis: Tips to Manage Stress
1. Educate yourself
When we meet with families in the Cincinnati Fetal Center, one of the first things we do is give them a notebook. We urge families to use it for writing down questions and taking notes. Any time you have a question, ask it. That’s how you’ll learn, and it’s how you’ll become more comfortable with the decision-making process. Our whole team—from our nurse coordinators to the doctors to the social workers—are open to answering whatever questions you might have. Lean on us. We’re used to hearing these worries and are experienced in handling them. Further, make sure that you find a reputable center, one that has been doing surgeries for a long time.
2. Find out about possible alternative therapies
In some cases of TTTS, an amnioreduction can be done to reduce the fluid around the recipient twin. The reduction in amniotic fluid could delay or eliminate the need for surgery, although it does not correct the underlying problem of TTTS. Sometimes, fetoscopic laser photocoagulation (SFLP ) is not the most appropriate line of intervention for a particular patient. Also, a medication called Procardia (nifedipine) can be prescribed anytime the recipient twin has an increased workload on its heart.
3. Take the time you need to make this decision
While you might have to make a decision about surgery rather quickly, it’s important that you consider it carefully. You need to come to a point where you are sure of the decision you are making.
4. Make the best decision for you and your family
We in the Cincinnati Fetal Center can provide medical explanations, outcomes data, and vast expertise in fetal care. But ultimately, no one knows what’s best for you and your family but you.
5. Be careful where you look on the Internet
As with any medical condition, you can find plenty of stories about TTTS on the web. Some sites can be helpful, while others might just worry you more. We refer our families to the Cincinnati Fetal Center website for information. Likewise, other reputable medical centers that perform SFLP to treat TTTS can be trustworthy sources of information.
6. Know what to expect post-surgery
Be sure to discuss ongoing pregnancy concerns after SFLP surgery. Most mothers will need to be on modified bedrest for the remainder of the pregnancy. We recommend finding families and friends who can do the grocery shopping, help with younger kids, and stick around if there is an inpatient admission. Further, if you are employed outside the home, it may be worthwhile to research work benefits regarding FMLA or benefits that you may need to utilize during the pregnancy. On average, mothers who have the SFLP procedure deliver around 32 weeks. This information can help mothers plan for the post-surgery timeframe.
7. For out-of-towners, rely on the resources available to you
Surgery for TTTS at the Cincinnati Fetal Center can mean a stay of up to six days or more in Cincinnati. If you will be traveling here for treatment, Cincinnati Children’s Guest Services can help with travel and lodging arrangements.
8. Most important, take good care of yourself
With twin-twin transfusion syndrome, often there is not a lot of time in between receiving the diagnosis and undergoing surgery. With what little time you do have, take some comfort measures. Put your feet up; keep up with drinking lots of fluids; monitor for contractions; use warm, moist heat for backaches; get some rest; eat healthy; rely on willing and able family members to do housework and take care of other children. Taking care of yourself is valuable right now, so you’re in good shape for what is to come.
Facing the possibility of fetal surgery can be draining. But knowledge and support can make a big difference in how stressful this time is. We take great pride in helping families through this journey.