2 stories, 4 babies: Support and care for complex twin pregnancies
March 26, 2019
On Your Pregnancy Matters we’ve discussed pregnancy outcomes that involve congenital problems, such as heart conditions or a baby having no kidneys.
These twin pregnancies can be challenging to manage from a medical perspective. As one can imagine, the outcomes from these situations can be heartbreaking. However, the stories of these families also can be inspiring.
Anomalies in identical and fraternal twins
The risk of congenital abnormalities in identical twins is about double compared to singleton pregnancies, and also about double compared to the risk for fraternal twins.
When we say “identical twins,” many people assume that 100 percent of everything about the fetuses will be the same – genes, organ development, growth, etc. – like having a carbon copy of one baby. But that’s not true.
For reasons that aren’t quite understood, there’s a higher chance for congenital abnormalities in identical twins, especially abnormalities involving the heart and midline face, such as cleft lip. It is important for parents to seek care as early as possible in the pregnancy from a maternal-fetal medicine (MFM) team and neonatal intensive care unit (NICU) experts to prepare for the challenges that can present during and after pregnancy.
Challenges in managing twin pregnancies
From a medical standpoint, having one baby that is developing as expected is often the toughest part of managing these pregnancies. Parents are faced with difficult decisions, from invasive genetic testing to deciding to deliver prematurely via cesarean section (C-section) because of the health of the sicker baby, that could increase risks in the healthy twin.
When I manage these types of pregnancies, I also have a personal tug on the heartstrings because I have twins of my own. Perhaps that’s part of why I was so inspired by two patients who were in similar situations. Both families experienced complications that put their twins at risk, and both found positives amidst their tragic and scary situations.
Story 1: Kamdyn and Kaylen
Angela Kirby shares the story of her wife Callie’s pregnancy
After three rounds of in vitro fertilization, we were thrilled when we became pregnant with twins. We’d had my eggs genetically tested before they were implanted in Callie, and we were eager to meet our twins, Kamdyn and Kaylen.
During the first trimester, Callie experienced a little bleeding, but everything else was normal. Then, at our 24-week ultrasound, the doctor suspected that something was wrong with Kaylen’s heart. We were referred to Children’s Health in Dallas, where Callie works. The doctors found fluid on Kaylen’s lungs, so we were referred to the maternal-fetal medicine team at UT Southwestern. We got an appointment the next day with Jamie Morgan, M.D.
Dr. Morgan ordered a sonogram, which showed the same abnormalities. Kaylen’s heart issue turned out to be an A/V canal defect, which is highly associated with Down syndrome. A geneticist at the MFM clinic mentioned amniocentesis to test for Down syndrome, but we would have to do the test on both babies, which comes with its own risks. We were at 24 weeks, and Callie and I decided the result wouldn’t affect our decisions regarding the pregnancy, and we declined the test.
Then, Dr. Morgan suggested we meet with a geneticist because some of Kaylen’s issues were concerning for hydrops, a condition that causes severe fluid buildup around a developing baby’s organs. We were shocked – we’d had ample genetic testing done before pregnancy.
By the following week, Kaylen’s fluid levels had doubled, and Dr. Morgan said the condition was beginning to look more like hydrops. The prognosis was grim for Kaylen, and Kamdyn was potentially at risk as well. By 26 weeks, Callie had started to develop preeclampsia and had begun to retain fluid – now we were concerned about her health as well.
That week, we had a frank and honest discussion with Dr. Morgan and Shivani Patel, M.D. She told us that Kaylen likely wouldn’t make it to term with the rate of progression of the hydrops. However, Kamdyn was doing well. Becky Ennis, M.D., our neonatal specialist, said she would be comfortable delivering Kamdyn at 30 weeks should Kaylen’s condition get worse.
At 29 weeks, Callie was diagnosed with mirror syndrome, a phenomenon in which her body took on the fluid buildup symptoms affecting Kaylen. In just six weeks, Callie had gained 72 pounds of fluid, and her blood pressure climbed dangerously high. At our 30-week visit, we were immediately admitted to the hospital for constant monitoring. We were there for six grueling days, in which we focused on keeping Callie calm and delaying delivery as long as possible so the girls could develop further.
While we were in the hospital, Kaylen’s fluid quickly increased in volume to a point that it was restricting Kamdyn’s growth. Through it all, Dr. Morgan was a steady source of support. She helped us manage our expectations and answered all our questions honestly and kindly. A pivotal point was when she and Elaine Duryea, M.D., told us we had done nothing wrong to cause the condition. It was sad, but also a relief. Then, they said it was time to consider early delivery in the best interest of Callie’s and Kamdyn’s health.
On March 22, 2018, Callie’s blood pressure climbed into the 200s. At 9 a.m., Dr. Duryea recommended we deliver that day via C-section. By 11 a.m., we were in the operating room with about 30 staff members from Clements University Hospital – MFMs, NICU doctors, and nurses – to deliver our girls. Given Callie’s precarious health, we worked with the MFM team to avoid putting Callie under full anesthesia until after the babies were delivered. Not knowing whether Kaylen would survive after birth, Callie wanted the opportunity to meet her and say goodbye.
Kamdyn was born at 11:26; Kaylen at 11:28. Callie got the chance to briefly see both babies before being put under, and I watched as the neonatal team took care of Kamdyn and Kaylen in the operating room. Kamdyn was tiny at just 3 pounds and needed a little help breathing. The doctors checked Kaylen’s heart and placed tubes in her chest to try to reduce the fluid around her lungs.
Surprising everyone, Kaylen survived nine days after delivery. During that time, we were on an emotional rollercoaster. Kaylen seemed to get better, then worse – a pattern that repeated several times. The NICU team worked relentlessly to keep her comfortable while looking for potential causes of her hydrops. Her heart condition was ruled out as the cause because it was not severe enough, and there were no signs of genetic issues. Unfortunately, in many cases of hydrops, a specific cause cannot be found.
After delivery, one of our major struggles was balancing time attending tests and workups for Kaylen with bonding with Kamdyn, who was also in the NICU and needed us just as much. It was very hard, but we were thankful that the MFMs had been honest and transparent with us about everything throughout the pregnancy. We’d had six weeks to prepare ourselves and our family before we had to grieve.
Callie began to get progressively healthier after delivery. After 63 days in the NICU, we got to bring Kamdyn home. She’s been growing nonstop ever since, hitting all her milestones and bringing us joy every day. She likes to visit the NICU nurses and doctors who were our family for the first two months of her life – and among the few people who got to meet her twin sister.
That was our inspiration for creating our charity, Kaylen’s Fight. We were fortunate to be able to stay in a hotel near the NICU rather than sleeping in the lobby like we watched so many families do. We wanted to help support NICU families during their time of need, and also help to partner with a team to help fund research for hydrops. Nothing will ever fill the hole that losing Kaylen left in our lives. But if we can help just one family in the NICU, we will have honored her memory in a meaningful way.
Story 2: Paige and Ella
Sally Bailey shares her pregnancy story
My husband Brandon and I found out we were pregnant with twins the summer after we were married – the first of many surprises we would experience that year. Twin pregnancies are, by nature, more complicated than single-baby pregnancies, so we were referred to a maternal-fetal medicine specialist in Oklahoma City, where we were living at the time.
Our initial checkup showed that everything was normal. But a few weeks later, the doctor discovered that one baby had more amniotic fluid around it than the other. The babies were diagnosed with twin-twin transfusion syndrome (TTTS), a rare condition in which twins share one placenta. In other words, one twin was getting too much blood and the other not enough. Our already complicated situation had become even more complex.
Most cases of TTTS are fatal to twins. Our MFM watched us closely and told us that we were at risk to lose one or both babies. We were referred to a doctor in Houston who performs in utero surgery to laser away the blood vessels the girls were sharing. When we arrived, the doctors did a head-to-toe workup of the twins. They discovered that Paige had a congenital heart defect and that Ella, other than the TTTS, was perfectly healthy.
We decided to go through with the surgery, which was scheduled for the following day. However, when we arrived, the surgeon said he had consulted with a pediatric cardiology colleague and the doctors wanted the girls to develop a little more so they would have additional room to operate and so the surgery would be slightly less complex.
The surgeon recommended we “go home and wait for the situation to get worse.” While we understood his reasoning, the brusque manner in which he told us was alarming. We became increasingly worried as we headed back to Oklahoma.
Then, something remarkable happened – the girls’ condition started to improve on its own. It was amazing, considering that the surgeon had said only 10 or so of the 1,000-plus twin sets he’d treated for TTTS survived without surgery.
I saw my doctor in Oklahoma City every other day for ultrasound anatomy scans, and we continued to see improvement. However, knowing that we wanted Paige to be close to a strong pediatric cardiology team, we decided to move to Dallas (both Brandon’s and my hometown). We’d do anything for our kids; moving was the best option for our family.
We connected with the MFM team at UT Southwestern, where Shivani Patel, M.D., became our doctor. To me, she was an angel walking on earth. She was there with us through the good times and the scary times, always level-headed and always emotionally supportive and honest.
Around 32 weeks, I started to develop high blood pressure and was admitted to the hospital. Amazingly, the twins stayed in utero for 34.5 weeks before we had to deliver via C-section, which we all decided was the safest route to avoid adding stress to Paige’s heart.
After delivery, things got a little hectic. Ella was born healthy, but small. Paige had some difficulty breathing due to her weak heart. I got to see Paige before she was transferred by ambulance to Children’s NICU. Brandon went with Paige while my mother stayed with me and Ella at UT Southwestern.
It was stressful to be separated like that; however, we were grateful that we were expecting it thanks to the honest discussions we had with the MFM and NICU doctors. Not once did they sugarcoat our expectations. The doctors were supportive, kind, and realistic, which was exactly what we needed to navigate the complex pregnancy and birth.
The twins’ birth was not the beautiful, serene experience mothers hope for, but thankfully, everything turned out alright. Today, the girls are 3, and they’re vibrant and healthy as can be. You never would guess that their entrance into the world was so challenging.
A few closing thoughts
To find out whether you or a loved one might benefit from seeing a specialist, call 214-645-8300 or request an appointment online.
Expecting parents, especially with complicated pregnancies, should always feel comfortable asking questions. It’s OK that you don’t know what to expect, but you should expect your questions to be addressed honestly and completely. The doctor is there to support and encourage your emotional and physical health. A good MFM and NICU team will make you feel respected and cared for while empowering you to make educated decisions about your body and your babies.
If you find yourself carrying twins with one baby having a problem, I recommend seeking care from doctors who have experience managing these complex pregnancies. The care involved is part science and part art, and experience makes a difference – both in recommendations for medical care and in helping families navigate their emotions during and after pregnancy.
