Twins Magazine 2004 January February

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Special Miraclesby Karen JohnstonHMO forced to pay for TTTS surgeryWhen I was 12 weeks pregnant, I learnedI was having twins. At 14 weeks, specialistsfound that the twins I was carryinghad Twin-to-Twin Transfusion Syndrome(TTTS). I opted for laser surgery to savemy twins because my only alternative wastermination. My insurance companydenied this coverage.My doctor, Dr. Acker, recommendedthat I research the condition to educate myhusband and myself for the decisions tocome. He also suggested that I contact Dr.Ruben Quintero at the Florida Institute forFetal Diagnosis and Therapy to obtainmore information on laser photocoagulationsurgery.An ultrasound at 16 weeks showed thatthe twins’ situation was considerablyworse. The recipient baby had significantlymore amniotic fluid than she hadhad two weeks earlier, and the donor babywas now stuck to my cervix and had verylittle amniotic fluid in her sac. Her kidneyswere visible on ultrasound, but herbladder was not. Based on the presenceof polyhydramnios/oligohydramnios inthe twins, and the absence of the donortwin’s bladder on ultrasound, I was diagnosedwith Stage II TTTS. This conditionis extremely serious, particularly when itappears prior to 25 weeks.The early presentation of the conditionand its severity left us two choices.We could choose to terminate the pregnancyimmediately, or let nature take itscourse over the next few weeks and thepregnancy would terminate itself. Or wecould opt for laser photocoagulation surgeryto treat the underlying pathologyitself. Dr. Acker felt that serial amniocentesis,a common treatment, was not anoption for us.Pregnancies that develop signs ofTTTS after 26 weeks’ gestation usually aremanaged by serial amniocentesis, alsoknown as amnioreduction, as the fetusesare at a viable age and theoretically ableto live outside the womb. It is a means ofpreventing pre-term labor and the successrate may be as high as 50% to 60%.Jessica Marie and Alyssa Renee, at 6 weeksFor a number of reasons, success ratesfor this procedure prior to 26 weeks arenot nearly as high. To begin with, removingextra amniotic fluid from the recipienttwin’s sac does nothing to address theunderlying issues.Amnioreduction before26 weeks carries risks of infection andbleeding, and repeat treatments significantlyincrease the risk of membrane rupture,which can effectively producemonoamniotic twins. Finally, amnioreductionis associated with a high risk ofcerebral palsy.With the early onset and clinical severityof my twins’ TTTS, amnioreductionwould pose an unacceptably high risk ofpregnancy loss, spinal or brain deformitiesand extremely premature birth. Mydoctor suggested laser photocoagulationby Dr. Quintero as our only viable treatmentoption if we intended to continueto the pregnancy. Dr. Quintero has performedclose to 300 surgeries of thisnature and is considered the world’s leadingauthority on this procedure. As myHMO repeatedly pointed out, this surgeryis still considered experimental, and assuch, must be performed by the mostexperienced surgeon in this field in orderto obtain the best chance at success.Tufts Health Plan denied coverage forthe surgery, suggesting that I enroll in anon-going, NIH-funded clinical trial at theChildren’s Hospital ofPhiladelphia. This trial isa double-blind, randomizedtrial, in whichparticipants receiveeither serial amniocentesisor laser photocoagulationsurgery, with thetreatment protocol.I needed to have thesurgery as soon as possible,and with the bestqualifiedsurgeon, or risklosing my twins. Despitethe expert opinion of Dr.Acker—a boardcertifiedmaternal-fetal medicine specialistwho is also head of obstetrics and gynecologyat world-renowned Brigham andWomen’s Hospital and has focused his 25-year practice on multiples pregnancies—Tufts again denied coverage. My husbandand I even while awaiting the results of ourappeal with Tufts, flew to Tampa, Fla., forthe surgery at 17 weeks’ gestation. Weknew that the results of the appeal were notgoing to affect our decision.While in Florida I learned that TuftsHealth Plan had denied my appeal again.We proceeded with the surgery nonetheless,paying up front more than $18,000for the procedure.Jessica Marie and Alyssa Renee wereborn on Nov. 13, 2002, at 28 1 ⁄2 weeks.Shortly thereafter, the Office of PatientProtection at the Massachusetts Dept. ofPublic Health overturned Tufts HealthPlan’s denial of coverage and ordered theHMO to pay in full.We recently celebrated Jessica andAlyssa’s first birthday—and our decisionto have this surgery.Karen Johnston lives in Weymouth, Mass., withher husband and thriving 14-month-old twin girls.36 JANUARY/FEBRUARY 2004 www.TwinsMagazine.com
SHOPPESpecial Gifts for Families with MultiplesNEW!A. 12" x 15"B. 12" x 15" Tiny Fingers and Tiny ToesCelebrate twins and create a lasting keepsake!Do-it-yourself kit comes with non-toxic ink pad and an extra verseand-hand/footprintpage in case you goof. Designed exclusively forus. Perfect gift for grandparents. Openings for twin photo alongsideeach unique “print”. Frame is white painted wood. Overall size12"Hx 15"W.A. Fingers - SF90035 $39.99 eachB. Toes - SF90036 $39.99 eachNEW! Growing up TwinsGrowth ChartTWINS Exclusive! Created especially forfamilies with twins. Vibrant colors andadorable critters adorn this chart designedto hang on the wall. A unique accent piecefor your children’s room. Celebrate yourchildren’s growth milestones during theirearly years.Your family will enjoy this lifelongkeepsake. Printed in full color andlaminated for long-lasting durability. Usea permanent marker to write each child’sname in the banners at the top, and thennote your darlings’ heights at importantmoments in their young lives. Ribbonhanger and adhesive hook-and-loop tabsincluded.When your children outgrow thechart, each one gets to keep a brightlyenameled customized wooden ruler to usewith school projects. 40" H x 12" W.SS03001 $25.95 eachTWINS Lifetime Memory BookTWINS Exclusive! This remarkable new bookcaptures the special moments in your life and the lives of yourtwins! Every one of the 56 full-color pages is filledwith the gorgeous watercolor illustrations of renowned Californiaartist Jerianne Van Dijk. They await your thoughts, family facts,and photos. Special pages for info from when Mom and Dadwere growing up, your babies’ wonderful “firsts”, and your familytrees. You’ll love the luscious sherbet colors in this volume.Hard cover, 8.5" x 11" on heavy, durable paper stock We sell aset of two at a special price so each of your twins will have one.SS03003 $34.95 for a set of 2 booksDozens more products available atwww.TwinsMagazine.com Personalized Twin AfghanClever original design created by an artist with twins andexclusive to us. Woven throw in a large size is personalizedwith your twins’ names and their birth date in greenembroidery. 100% cotton, washable. 46" x 67". Shippeddirectly from manufacturer. Allow 3 to 4 weeks for delivery.No express delivery.SF90112 $49.99 eachBe sure to include personalization information on the orderform or when you order by phone.To place an order, call (888) 55-TWINS, go online or use the order form in this issue.www.TwinsMagazine.com SEPTEMBER/OCTOBER 2003 37 37
Page 2 and 3: New One-pieceBody Designfor easier
Page 4 and 5: from the editor“Help! I need some
Page 6 and 7: mailboxSchool epidemicTeachers and
Page 8 and 9: in the newsCanadian family with fou
Page 10 and 11: The Zygosity Puzzleby Geoffrey Mach
Page 12 and 13: Toddlers are known for their “No
Page 14 and 15: Married with Twinsby Joshua Coleman
Page 16 and 17: researchInterview by Patricia M. Ma
Page 18 and 19: “Help” continued from page 17Do
Page 20 and 21: Parents’ BookshelfMore outstandin
Page 22 and 23: Twins in the ParkEllen Weiss $3.99D
Page 24 and 25: Hardwired to ConnectScientific find
Page 26 and 27: "Hardwired" continued from page 25m
Page 28 and 29: The First Yearby Lauren KafkaThe be
Page 30 and 31: SHOPPING GUIDEAddress LabelsAnnounc
Page 32 and 33: Nursing PillowsFinally! A feeding p
Page 34 and 35: growing stagesRSV season symptomsan
Page 38 and 39: 11" x14"11" x14" Multiples of LoveY
Page 40 and 41: Threesomesby Joann M. AmorosoThe ha
Page 42 and 43: TWINS MagazineThe magazine for pare
Page 44 and 45: DoubleTakes Boy/girl twins are (alm
Page 46: Happy Endingsby Kandace YorkOh, my

Twins Magazine 2004 January February

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