What To Do When Complications Arise
By Christina Elston
Jessica Fisher had a busy month ahead. Pregnant with twins after two years of frustration and fertility treatments, she was at a 19-week ultrasound where she would learn whether she was having boys or girls. Two days later she and her husband were headed to Palm Springs to celebrate Christmas and Hanukkah with family, followed by a trip to Las Vegas to celebrate her 30th birthday, then a “babymoon” cruise to Mexico.
The doctor got started, and quickly put an end to Fisher’s plans. With a cervix that was barely holding the babies in, Fisher was told to go straight to the hospital. “My cervix was basically open,” she says, and she was close to suffering a miscarriage and losing both babies. “I asked the doctor how much longer I would have had, and he said a couple of days.”
While Fisher’s diagnosis of “incompetent cervix” in December 2012 came as a shock, not all high-risk situations are a complete surprise. Pregnancies can be considered high risk for a number of reasons:
Underlying problems with the mother’s health, such as diabetes, high blood pressure/hypertension, thyroid problems, kidney disease, “advanced maternal age” (meaning the mom-to-be is older than 40), or being overweight or obese;
Health issues in the mother that develop during the pregnancy, such as gestational diabetes or incompetent cervix; or
Problems with the baby, such as a genetic disorder, a neural tube birth defect or a heart condition.
A pregnancy can also be considered high risk if the mother has a history of miscarriage or pre-term labor, if she has had multiple cesarean sections, or if she is carrying multiple babies.
Dealing With High-Risk Pregnancy
When a woman is told she has a “high-risk” pregnancy, the first thing she should do is “spend time with her doctor discussing what real issues are in play that are making her high-risk,” says Joseph Ouzounian, M.D., chief of the division of maternal-fetal medicine at Los Angeles County USC Medical Center. Ouzounian and other maternal-fetal medicine specialists offer this advice about what to do next:
Ask about referrals. If your regular OB-GYN tells you that your pregnancy is high risk but doesn’t offer a referral to a maternal-fetal medicine specialist, ask whether you need one. These specialists often act as the “coach,” coordinating a woman’s care with her OB-GYN and with other specialists as needed, says Daniel Kahn, M.D., a maternal-fetal medicine specialist with UCLA Medical Center. A high-risk specialist should be able to give you a clear understanding of the health risks you and your child are facing, and what can be done to lessen those risks and deal with complications. “If we’re the coach, we should be able to lay out the game plan,” Kahn says. The specialist can’t necessarily turn a high-risk pregnancy into a “normal” one. Kahn points out that no doctor can prevent a child from being born with Down syndrome or a heart defect, for example. But they can make sure that everyone is prepared to take the best possible care of the child once he is born.
Consider additional testing. Ouzounian points out that women – especially women ages 40 and up – face a “cafeteria-like plan of options” when it comes to fetal testing. Most women undergo at least one ultrasound to check for problems with the fetus, and many undergo more-invasive tests such as amniocentesis or chorionic villus sampling (CVS). A new option, cell-free fetal DNA testing, is available for women with a family history of Down syndrome or with potential problems detected by other screenings. This non-invasive test is given during the first trimester, and lets doctors examine fetal DNA in the mother’s blood.
A genetic counselor, referred by your OB-GYN or high-risk specialist, can help guide you through available tests and determine if any might be helpful for you.
Gather and keep track of your records, test results, and other information. As you talk with your OB-GYN, specialists and other caregivers, you’ll be hit with what Kathleen M. Berkowitz, M.D., a maternal-fetal medicine specialist at Miller Children’s Hospital in Long Beach, calls an “information train.” Do your best to take it in and, after appointments, spend some time writing down your questions.
You should also ask for your own copies of all of your medical records, including consultation letters, test results, and reports from any surgeries you have. Because each of your providers will keep a separate record, you might have information stored in several places. “The person who really is in the best position to maintain their records is the patient,” says Kahn. “Don’t be afraid to ask for it. You’re entitled to the documentation. There’s nothing that should be private from you.” Put all your information together in a binder, organized by date, so that your doctors can look at all of the information together.
Ask whether you are scheduled to deliver at the right hospital. It is essential that the hospital where you deliver your baby have the right facilities and staffing to care for your needs and your baby’s. One example: A woman with placenta accreta – a condition where the blood vessels in the placenta grow too deeply into the uterine wall and can’t be removed normally following the birth – could bleed to death if not delivered correctly. “She needs to deliver in a hospital with the best surgeons – because the surgery is difficult – and the ability to transfuse a lot of blood,” explains Sara Kilpatrick, M.D., who chairs the department of obstetrics and gynecology at Cedars Sinai Medical Center. “She probably shouldn’t be delivering in a level-one hospital.”
If your doctors believe you or your baby will need care from a particular specialist, or a transfer to a different hospital, meet with the specialist or someone from that hospital in advance and have a conversation about what will happen after your baby is born, urges Berkowitz. “If the hospital you’re planning to deliver at doesn’t have a very specialized need, you don’t have to wait until the end of the pregnancy to get those things arranged.”
Ask what to expect during the rest of your pregnancy. Depending on the reasons your pregnancy is considered high risk, you might need to plan for extra time off work, more frequent doctor visits, medication, or changes to your diet and physical activity levels.
Be honest with your doctor. “A lot of patients find it difficult to maintain all the advice their doctor gives them,” says Berkowitz. Women with chronic conditions such as diabetes, hypertension, or obesity account for easily half Berkowitz’s consultations, and these women can have trouble following dietary suggestions, monitoring blood sugar and taking medications on time. “Be up-front with what you feel your limitations are,” she urges. And be honest about any slip-ups. Don’t let your doctor think your medication isn’t working, for example, when the real problem is that you haven’t been taking it.
After her eventful ultrasound appointment, Jessica Fisher was sent to UCLA Medical Center, Santa Monica, where doctors administered medication to still contractions she couldn’t even feel, performed surgery to close her cervix, and put her on bed rest – for four months.
With time on her hands, Fisher started a blog (at www.broadwaybabies.wordpress.com). And unable to move around to connect with the half-dozen other women in the hospital who were also on bed rest, she started a private Facebook group so everyone could chat. The situation, she says, was far from the vacation people might imagine. She spent much time worrying and “preparing for the worst.” “I was worried that if I sneezed wrong, something would happen,” Fisher says.
Fisher made it to 37 weeks, and delivered two healthy babies, Ella and Ethan, on April 21, 2012. The day after her twins were born, the hospital announced that based on the group Fisher had started via Facebook, they were beginning a weekly in-person support group for moms on bed rest.
Fisher’s advice to anyone with a high-risk diagnosis is to be ready to let go of your plans. “Everything just gets changed, and you just kind of have to roll with it,” she says. It will help to surround yourself with things that remind you that you are going to be a mom. “Make the most of it,” she advises. “Stay positive. Keep the end in sight.”