Sur­geons re­move par­a­sitic twin pro­trud­ing from baby girl’s back

It took a team of 50 six hours to re­move ex­tra pelvis, legs, feet, toes

The Washington Post Sunday - - POLITICS & THE NATION - BY LIND­SEY BEVER lind­sey.bever@wash­ More at wash­ing­ton­ news/to-your-health

The ex­am­i­na­tions, X-rays and dry runs us­ing a 3-D model of her tiny spine all came down to this: A team of sur­geons made a care­ful in­ci­sion and, over the next six hours, sys­tem­at­i­cally re­moved an ex­tra pelvis, legs, feet and tiny toes that were pro­trud­ing from her neck and back.

Since birth, baby Do­minique had been car­ry­ing her par­a­sitic twin.

“It’s as if the par­a­sitic twin dove into Do­minique’s body and al­most made it in ex­cept for the waist out,” said John Ruge, di­rec­tor of pe­di­atric neu­ro­surgery at Ad­vo­cate Chil­dren’s Hos­pi­tal near Chicago.

Doc­tors say par­a­sitic twins — asym­met­ric con­joined twins in which one de­pends on the other’s bod­ily func­tions — are ex­tremely rare. Even more un­com­mon are par­a­sitic rachipa­gus twins, con­nected at the spine.

Ruge said there are fewer than 30 cases doc­u­mented in med­i­cal lit­er­a­ture — so few that they are of­ten ref­er­enced us­ing the pa­tients’ names.

“This one would be ‘Do­minique from Chicago,’ ” Ruge said.

Ten-month-old Do­minique, whose last name has not been re­leased, trav­eled more than 5,000 miles in Fe­bru­ary from Ivory Coast in West Africa to Chicago to un­dergo the op­er­a­tion at Ad­vo­cate Chil­dren’s Hos­pi­tal to re­move her par­a­sitic twin. Her doc­tors said the surgery was nec­es­sary be­cause with­out it, her heart and lungs would strug­gle to sup­port the ex­tra limbs and the strain would ul­ti­mately shorten her life.

It would take an army of vol­un­teers to make it hap­pen.

Chil­dren’s Med­i­cal Mis­sion West, a non­profit or­ga­ni­za­tion based in Ohio, ar­ranged Do­minique’s trip to the United States, ac­cord­ing to Ad­vo­cate Chil­dren’s Hos­pi­tal.

Flight at­ten­dants ac­com­pa­nied her from Ivory Coast.

On Feb. 5, a host fam­ily in Chicago was wait­ing to take her in and care for her dur­ing her stay.

“Do­minique flew half­way across the world with just a small bag that con­tained a few pairs of pa­ja­mas, di­a­pers, a bot­tle and pow­der for­mula called Nur­sie, a sippy cup, a rosary, and a piece of beau­ti­ful fab­ric that her mother wore around her shoul­ders for a photo at the Abid­jan air­port be­fore she bid farewell to her beloved baby for two long months,” Nancy Swabb of Chicago, the host mother, wrote on Face­book.

“Do­minique was jet-lagged and tired that first evening. (Ivory Coast is six hours ahead of Chicago.) The next morn­ing, how­ever, Do­minique's bub­bly per­son­al­ity was on full, joy­ful dis­play!” Swabb wrote.

Swabb had seen Do­minique’s pic­ture in a Face­book post from Chil­dren’s Med­i­cal Mis­sion West. The post, along with a photo that showed Do­minique ap­par­ently sit­ting on her mother’s lap, said: “Need­ing a home in Chicago area for a baby girl com- ing Feb. 5th. She will be in the states for 2 months. Let me know if you are in­ter­ested or know some­one will­ing to host this baby.”

“It re­ally spoke to me,” said Swabb, who has two adopted daugh­ters with her hus­band, Tim. “We just wanted to open our hearts and our home to a baby.”

Swabb took Do­minique to her doc­tor’s ap­point­ments, where she met her sur­gi­cal team and un­der­went ex­ten­sive tests, in­clud­ing an MRI, an MRA, a CT scan, X-rays and a CT pyel­o­gram to help doc­tors con­struct a 3D model of her un­usual anatomy. She car­ried her twin’s pelvis and blad­der, legs, feet and toes (and toe­nails), and spine — which was in­ter­twined with her own, her doc­tors said.

“This pro­vided a chal­lenge with re­gard to the dis­con­nec­tion,” Ruge said about the in­fant’s two spines. “It turns out the par­a­sitic twin’s pelvis was at­tached to the spine and pro­vid­ing some struc­tural sta­bil­ity for Do­minique’s spine. So it was im­por­tant to un­der­stand how the struc­tural sta­bil­ity of her spine was so that we did not desta­bi­lize her when we re­moved the par­a­sitic twin.”

For weeks, the med­i­cal team pored over Do­minique’s case, dis­cussing pos­si­ble con­cerns and so­lu­tions.

They prac­ticed the surgery us­ing the 3-D model.

Then early in the morn­ing of March 8, Swabb took the child to Ad­vo­cate Chil­dren’s Hos­pi­tal, where more than 50 sur­geons, nurses and clin­i­cians were wait­ing.

“The high­est risk to Do­minique was paral­y­sis,” Ruge said. “The rea­son is that the legs were func­tional from the par­a­sitic twin, so they had nerve in­ner­va­tion from Do­minique’s spinal cord and if there were any trac­tion or pres­sure put on Do­minique’s spinal cord, that would cause her to be par­a­lyzed. The cer­vi­cal por­tion of Do­minique’s spinal cord had no bony pro­tec­tion. Ev­ery­thing was planned to avoid this prob­lem.”

The sur­geons dis­con­nected the pelvis, nerves and blood ves­sels, then re­moved Do­minique’s par­a­sitic twin.

They were left with a gap­ing hole that they cov­ered with soft tis­sue and mus­cle from the ex­tra ap­pendages.

From the out­side, Do­minique looks like most other in­fants, aside from a bump on her neck that doc­tors say will go down over time.

In­side, her neu­ro­sur­geon said, she still has some “pe­cu­liar­i­ties” — she kept a piece of ab­nor­mal bone that is sta­bi­liz­ing her spinal col­umn and one of her kid­neys is lo­cated in the up­per por­tion of her chest.

But, Ruge said, “Ev­ery­thing is func­tion­ing nor­mally, and I ex­pect Do­minique to have a nor­mal life.”

Five days after her surgery, Do­minique was dis­charged from Ad­vo­cate Chil­dren’s Hos­pi­tal and re­turned to her host mother’s care.

“She’s just back to nor­mal,” Swabb said.

Swabb said she has been do­ing her own form of phys­i­cal ther­apy for Do­minique — hav­ing Do­minique turn her head side to side and putting things out of Do­minique’s reach so that she had to grab them.

“If you met her now you’d never know she had com­plex surgery,” Swabb said.

Do­minique’s fa­ther is a pri­mary school teacher and her mother stays at home to care for Do­minique and her three older sis­ters, ac­cord­ing to a state­ment from Ad­vo­cate Chil­dren’s Hos­pi­tal. “Her fam­ily could not fi­nan­cially af­ford to ac­com­pany her, but is re­ceiv­ing on­go­ing up­dates,” the state­ment said. “Do­minique will be es­corted home in a few weeks and will find her fam­ily wait­ing at the air­port in Abid­jan, the largest city in Ivory Coast.”

Swabb said she has great re­spect for the young child’s fam­ily.

“They were not will­ing to give up on their baby girl de­spite her chal­lenges and they sought this care for her, so it’s in­spir­ing to hear their story of love,” she said. “They were will­ing to trust es­corts who flew her here and doc­tors they had never met and a host fam­ily. They re­ally put a lot of trust in the whole net­work.”

In ad­di­tion, Swabb said, Do­minique has brought the Chicago com­mu­nity to­gether.

“Friends and neigh­bors of­fered di­a­pers and wipes and for­mula,” she said. “She sleeps in a bor­rowed Pack ’n Play, she rides in a bor­rowed car seat. Neigh­bors bought bot­tles for her at the store. . . . We're kind of liv­ing in a tur­bu­lent world and she’s brought a ray of sun­light to our neigh­bor­hood and our fam­ily.”

The Swabbs said they taught Do­minique how to re­peat words like, “da, da, da.”

They saw her ex­pe­ri­ence snow, grow her first two teeth and start to bear weight on her feet.


Sur­geons pre­pare 10-month old Do­minique for surgery on March 8 at Ad­vo­cate Chil­dren’s Hos­pi­tal in Park Ridge, Ill. Doc­tors say cases in which one twin de­pends on the other’s bod­ily func­tions are rare.


Host mother Nancy Swabb holds Do­minique, who trav­eled 5,000 miles in Fe­bru­ary from Ivory Coast for her surgery.

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