‘My conjoined twins have been separated twice’
When Crystal Copel and was told her unborn babies could be joined at the heart she panicked, but refused to give upon the girls, who are now celebrating their 18th birthday
Staring at the monitor, I tried to focus on the swirl of black and white dots. This was my first 17-week scan and I was so excited to catch a glimpse of our baby. I grinned at my husband, John, 44. We’d been married for four years and were thrilled that finally I was expecting.
A technician pushed the ultrasound over my expanding belly, all the time looking at the screen. Then she frowned, and peered closer. “There are two heart beats,” she said. “I think you are having twins.’’
Surprised, I gulped. Twins? “That’s great!’’ John said, squeezing my hand. It was a surprise but a happy one. We’d only planned one baby, but two was doubly exciting.
We drove back to our home to Houston, Texas, elated. It was a Saturday, and we had the weekend to celebrate by calling our family and friends. But on Monday, my obstetrician called.
“Crystal, I have looked at your scans, “he began. “From the measurements one of the babies is not growing properly. Can you come in for another scan?’’
Worry pulsed through me and as it was a few days before I could be booked in for another scan, I looked up what could be wrong. There was an endless list of possibilities though. “It’ll be fine,” John tried to reassure me, but after the scan our consultant took us into his office. His face was so serious that fear twisted in me.
“Your twins are conjoined,” he said. The word ‘conjoined’ sent me reeling. The doctor was still talking, explaining how our babies were facing each other. I was clinging on to John as he said that there were two embryos, with two heartbeats, fused together.
“If they are joined at the heart it will be impossible to separate them,’’ the doctor explained.
We were able to hold it together in the doctor’s office, then he let us out of the back door, so we wouldn’t have to walk through the waiting room filled with pregnant women and their husbands, and I burst into tears. John guided me to the lift and drove home. I cried all the way. “I don’t want to lose our babies,” I kept sobbing, overwhelmed.
Our scans were sent to a paediatric surgeon, Dr Kevin Lally, Head of Paediatric surgery at Children’s Memorial Hermann Hospital in Houston, and a well-known expert in the area. We had an agonising weekend, waiting to hear what he would say. Every time I researched conjoined twins on the internet I grew more depressed. All of the stories of conjoined twins were bleak. It happens in one out of 200,000 live births and between 40 and 60 per cent are stillborn. If they do survive the pregnancy either one or both babies die during surgery or are left with huge disabilities. I couldn’t see any other twins joined at the chest.
Even though I could feel my babies kicking inside me, I was terrified they would not make it, or if they did, they wouldn’t have any quality of life.
“I’m scared,” I told John. He hugged me and reassured me that everything was going to be OK, and I clung to that. My hand stroked my bump. “Please don’t be joined at the heart,” I prayed.
Time dragged on. While I was not working at the time. John, who was a pre-press specialist working at a digital pre-press printing company in Houston, would leave in the morning
and I would spend the day worrying alone. Then when he returned, we would discuss and pray that everything would be fine with our babies. We went back to the hospital three days later to see Dr Lally – who gave us the best news. “The girls aren’t connected at the heart,” he said. They were joined from the breast bones to their belly buttons. They had the same gastrointestinal tract but luckily the only organ they shared was the liver.
“There is a chance we could separate them,’’ he said.
Relieved, I broke down. I just wanted my babies to survive. I had to have regular scans to check that the girls were developing well, and ticked off every day that passed – it was a day nearer to their delivery.
Istopped trying to do research, as it was useless, but there were several specials on TV about conjoined twins. I watched had never had a medical problem or operation. Suddenly doom overwhelmed me and I was convinced I was going to die. I drew up a will two days before the operation. I wrote a goodbye letter to John and left it on his pillow. I laid out our life insurance documents saying what to pay off with the money. John never read the goodbye letter. He thought I was being foolish.
“You’re going to all be fine,” he said, but because he was so squeamish, he stayed in the waiting room. A nurse saw him and then made him come into the delivery room. Although I was terrified of what would happen to the girls and to me, I tried hard to stay calm. I didn’t want to hear what was going on so I had taken a cassette player with earphones to listen to music, but the battery ran out. To take my mind off the surgery, I calmed myself by focusing on all the fun things we would do with our daughters.
And then 30 minutes after the operation began, doctors managed to deliver our babies, Caitlin and Emily, through a C-section. The girls weighed nearly 15.4kg combined, and were brought to me to look at. “They’re beautiful,” I said, looking at them. I didn’t see them conjoined, they were just perfect to me.
Emily was smaller than her sister, and after being held by John, they were taken to neonatal intensive care. It was eight hours before I could hold my babies. They were covered in tubes and wires and it was a tiny cuddle and then they were taken for tests. Emily had a blocked intestine,
Doom overwhelmed me and I was convinced I was going to die. I even wrote a goodbye letter to John
them all but they were all depressing. One set of twins featured were joined at the head and couldn’t be separated. “That’s not going to be you,” I said, rubbing my bump. I refused to be down after that. My girls would be fine, I was determined of that, so I vowed to be positive.
We decorated the babies’ room and bought a large crib. “We will need another one soon,” I said, forcing myself to smile.
At 38 weeks I was scheduled for a Caesarean. I was very scared – I so had to be operated on at just two days old.
Our doctor suggested trying to separate them then, but further tests done two days later found that they shared the same bile ducts and gastrointestinal tract, which was discharging through one twin, Caitlin. So we had to wait until they were 10 months old and big enough to make it safer to operate.
We just wanted to take our girls home. But it wasn’t that easy. We had to work out what to do for a car seat, as the hospital could not release the girls without an approved device. In the end we found a travel bed with handles to double as a car seat, and wedged them in with pillows.
Back home it wasn’t easy. I had to learn how to hold the girls and feed them. Emily could not absorb fat, so she was always hungry. She would ravenously suck her bottle and the rice cereal I put in her formula, but was never satisfied. It was heartbreaking to watch. I had been pumping milk for them while they were in hospital, but they found Emily had a reaction to the protein in my breast milk, so we had to put them both on a special formula. It was also not easy finding clothes for the girls. I had to get frocks made for the twins at my local tailors.
Over the months Caitlin grew bigger than Emily and would try to roll over on her sister. Emily would flail her arms, screaming, and then at eight months Emily began to try to crawl but Caitlin was too big for her to move.
During the 10 months, they had been in and out of hospital for several day operations for skin expanders and to conduct tests to check if
their organs were all performing well. They expanded their skin with a mechanical devise to create skin that matches the colour, texture, and thickness of the surrounding tissue, while minimising scars and risk of rejection. I had confidence in the doctors and what they were doing.
Eventually at 10 months my girls were ready to be separated. I was terrified one or both of them wouldn’t make it.
They had been tested extensively. “They’ll be alright, this is going to change their lives for the better,’’ John reassured me.
Before the babies were wheeled into the paediatric operation theatre at Children’s Memorial Hermann Hospital in Houston, I held them tight to my chest. “You’ll be fine, don’t worry,” I whispered to them through my tears. “I’ve been praying and it will all be fine.”
The operation was scheduled to be 12 hours. An incision was made on their chest where the two girls were connected and then the doctors worked to separate the organs. Because they shared a liver, which is the only organ that regenerates itself, Dr Lally was able to give them both half and redirect one of the two bile ducts that were discharging only through Caitlin to Emily.
“The operation has gone very well,’’ said Dr Lally, emerging after eight hours, as we waited to see our girls. They were hooked up to all kinds of wires and were in deep sedation when we peeked through the glass doors of the ward where they were recuperating. I was so overwhelmed that the operation was a success that I hugged John and sobbed with relief.
Caitlin and Emily were home within 10 days and grew and flourished, but the first few years were not without difficulties. They both had skin expanders to grow extra skin to cover the large wounds on their abdomens, but as their skin was too thin, it took a long time for the skin to acquire its natural look and condition.
Like all mothers I didn’t mind clearing up after my babies, but, like John’s squeamishness, I have a terrible fear of blood and would pass out getting a paper cut, it’s that bad. So while I would have preferred to leave the area while nurses cleaned and dressed the girls’ wounds regularly, the medical professionals told me that the children get agitated when their mothers are not around.
So I sat in on as many of the minor operations and cleaning up and dressing procedures as I could because I knew my babies needed me to be there. Emily had a bile duct leak, which ate away at the abdominal covering, making an open wound
They had several follow-up operations – Emily had more. They were separated in April, and by October they were done with all the surgery and have never looked back since then.
When they were little Caitlin was the leader, and Emily was happy to take a back seat and watch her sister. Caitlin used to drive her sister around in a toy jeep we had. She was always the boss, but when they went to high school they both came into their own. Now they drive real cars and funnily enough Caitlin always prefers Emily to do the driving.
“I’m going to miss Caitlin when she goes away to university,” said Emily. “I, too, am going to miss her,” said Caitlin. “But we will be calling each other every night.”
Being twins they are close, and will instinctively know if the other is upset, but they have never played tricks pretending to be each other. The girls’ cousin, who is nine months older than them, used to call them both ‘Emily Caitlin’ when they were little, they are so alike. They are also intensely bright, and would study hard together. Out of school they were busy and popular – Caitlin played softball and volleyball and was a cheerleader while Emily managed the softball team, and played clarinet in the school band. Best friends, they relied heavily on each other. They are now 18 and have just graduated high school as covaledictorians – students who deliver the closing or farewell statement at a graduation ceremony – top of their class and have earned scholarships to college.
As my husband and I watched our girls give their speech at the graduation ceremony, we were overwhelmed with pride, remembering our fear when we first found out about their condition. They jokingly started the speech with one saying one word each very fast as if one voice. They did it seamlessly, making everyone laugh.
Caitlin and Emily are about to be separated for the second time. Emily will go to the University of Houston, to study hotel and restaurant management to become a wedding planner. And Caitlin will go to Concordia University, where she will major in secondary education and study to become an English teacher.
It will be painful for me, and I know the girls are going to miss each other, but it’s exciting to see them step into this next phase of their lives.
When we were first told our daughters were conjoined, we thought life was over for them, but we were wrong. Our girls are living proof of that.
At our girls’ graduation, we looked on with pride, remembering our fear about their condition
that required constant and regular medical care. The doctor said she would have problems eating, but she has been fine.
the op – they
were The girls before
they were separated 10 months before
I smiled through
my baby shower, though I was even terrified about
The girls after
their successful, eight-hour operation
Growing up, and even now, the
girls rely on each other
up way for a check- All smiles on the
separated after they were
Douglas Caitlin (left) High and Emily with school at Lutheran Lusk, head of
Caitlin (left) with
Emily in their Valentine’s Day