‘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

Friday - - Front Page -

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 fu­ture

The girls after

their suc­cess­ful, eight-hour op­er­a­tion

Grow­ing up, and even now, the

girls rely on each other

so much

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

hats

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