TAPS-DANCING WITH OUR TWINS
One family’s unexpected twins came with another surprise that turned life as they know it upside down.
In many respects, Antoinette and Wimpie Cowan are an oh-so-ordinary family. An assistant financial broker and operational manager living in Pretoria, the couple had two children: Matthew, born in 2007 and Niah, who followed in 2009. Then Covid happened in 2020, and when Antoinette started feeling unwell, and because she was already over 40, she didn’t realise at first that she could be pregnant. But not only was she pregnant, she was carrying twins – a fact that came
as quite a shock. “From the very first visit to my gynaecologist, she warned me that it was a high-risk pregnancy, because of my age, although I’m very healthy, and also because the twins were monochorionic diamniotic. For that reason, I was under my gynae’s care as well as a foetal specialist from the start.” Monochorionic diamnotic means the twins are identical, formed from the same sperm and ovum, and share one placenta even though each twin is in its own amniotic sac.
WHY WAS THIS PREGNANCY HIGH-RISK?
All twin pregnancies are monitored more closely because of various risk factors. But babies who share a placenta but have two amniotic sacs are especially at risk of twin-to-twin transfusion syndrome (TTTS), in which one twin (the “donor”) gives away more blood through the placenta to the “recipient” twin than it receives back. The donor twin, according to the Johns Hopkins School of Medicine, runs the risk of organ failure and malnutrition, whereas the recipient twin receives too much blood and can have heart complications as a result. TTTS can sometimes be resolved by lasering some of the veins in the placenta in order to distribute the blood flow more evenly. With TTTS, there is a difference in the levels of amniotic fluid for each twin.
At each scan, Wimpie and Antoinette were looking forward to seeing their babies’ faces, but “Aimee was hiding her face deep under my heart each time,” Antoinette recalls.
At 16 weeks’ gestation, the parents were informed that their twins had TTTS, but at the mildest level. TTTS affects 5 to 15 percent of identical-twin pregnancies. (See box bottom left.)
The TTTS was under control, but eight weeks later, at 24 weeks’ gestation, the twins were diagnosed with TAPS – twin anaemia-polycythaemia syndrome, a rare condition that is similar but not identical to TTTS and that occurs in about 3 to 5 percent of monochorionic pregnancies. With TAPS, there is no difference in the volume of amniotic fluid in the babies, but a slow, chronic passage of blood from the one to the other. In Antoinette’s case, Aimee was transferring her blood to Emily. Aimee was becoming anaemic, Emily polycythaemic. “Only about 5 to 15ml of blood is moving daily from the donor to the recipient,” Antoinette says, “an amount that sounds small but is significant in a newborn baby – and cumulative.” This was serious. At 28 weeks’ gestation Antoinette was hospitalised so that the twins could be monitored constantly. Because it was during Covid, Matthew and
Niah were not even allowed to visit their mother. And after three weeks in hospital, the foetal specialist made the call: the babies stood a better chance of survival outside than inside the uterus.
On 14 January 2021, Emily and Aimee were delivered by caesarean section.
“I saw them for three seconds before they were whisked off to the neonatal ICU,” says Antoinette. “Aimee was white as snow, Emily was a deep red – a TAPS trademark. Doctors immediately started taking blood from Emily. She had so much blood that her little heart could not beat fast enough to move the blood around her body. Counterintuitively, Emily was actually sicker than Aimee at the beginning, as her heart had to work so hard.”
Donor twin Aimee immediately received a blood transfusion.
And so began the family’s “new normal”. Because of the hyper-strict Covid rules at the time, Wimpie was not allowed to meet his new daughters for more than a month. Emily spent a total of 48 days in NICU and, after they’d battled jaundice and an infection, was finally cleared to go home.
Aimee faced a longer road ahead, spending a whopping 72 days in NICU. In addition to jaundice and infections, she was diagnosed with reflux and chronic lung disease. She needed a further two blood transfusions before her bone marrow started producing its own red blood cells. And when Aimee was finally able to come home, she was still dependent on home oxygen for another two months.
BUT THIS WAS NOT THE END
Research on TAPS is sparing. The condition was first described only 15 years ago, in 2006. It is beginning to seem as if hearing problems, cerebral palsy and other learning and motor control issues are part of the possible sequelae of the condition. Aimee was found to be bilaterally deaf at three months old. She also has cerebral palsy and is quadriplegic. “We didn’t understand, until then, why she was unable to hold her neck up and did not enjoy tummy time,” Antoinette explains. Regular physiotherapy, occupational therapy and speech therapy became a part of the Cowans’ lives. Aimee was fitted with a cranial helmet as her head wasn’t rounded correctly. In June 2022, she received her first cochlear implant operation to alleviate her hearing loss. (Before that time, she wore hearing aids.) The charity Caring Daisies provided a wheelchair for her. Today, Aimee weighs just 8.7kg, whereas Emily weighs 12kg and is walking.
UPSIZING
“Our lives have completely changed in the last two years,” says Antoinette. “We had to move to a bigger house and buy a bigger car.”
Matthew and Niah have also had to grow up very quickly. “They’ve helped us with the twins from Day 1,” says their proud mother. “They love their sisters. I also have an amazing nanny who has been on a nanny course and who ensures Aimee does her exercises at home.” A Facebook blog keeps friends and family up to date with the twins’ progress. Because TAPS is so rare, the family is still negotiating with their medical aid scheme to demonstrate that her conditions were caused by TAPS – a lengthy process with no guaranteed outcome. In the meantime, the bills pile up. Her parents have started a Back-A-Buddy fundraiser to help them cope with their escalating medical costs, while a friend held a wine auction in their aid. Antoinette says TAPS is a rare condition, and to date, she has not met any other South African babies with the condition, though she would very much like to. She went so far as to join a parents’ support group in The Netherlands in her search for answers and advice. If you would like to connect with her family, please follow their Facebook page.