The Story of Identical Twins with VATER Syndrome

Hello, my name is Michelle, and I am 32-years old, and my husband, Ismael, is 30.  We have been married for nine years.  We have three daughters, Jasmine, Jadira, and Joscelin.  Jasmine is 4-years old.  Jadira and Joscelin are identical 2-year old twins born with the VATER Syndrome.  During my pregnancy I was diagnosed with complications for having monoamniotic, monochorionic twin gestation, meaning my pregnancy was with identical twins in one placenta and had no membrane to separate either twin.  At four months into my pregnancy, during a routine ultrasound, I was told by my OB/GYN, Dr. Francisco Garza, that my twins had the VATER Syndrome.

At six months of pregnancy I was hospitalized at St. Peter's High Risk Neonatal Hospital in New Brunswick, New Jersey for the rest of my pregnancy, due to my complication of a high-risk pregnancy.  During my pregnancy I was given a steroid called Betamethozone once a week for four weeks to increase the twins' pulmonary maturity in case of umbilical cord entanglement, decreasing oxygen to one another, demise of one or both twins, or if I went into premature labor.  I had twice daily fetal monitoring, and non-stress testing.  Once every week antenatal ultrasounds and biophysical profiles were done.

On May 3, 1994, I delivered Jadira and Joscelin at 8 months by Caesarean section by Dr. Francisco Garza, OB/GYN, from Trenton, and a team of OB/GYN high-risk specialists from St. Peter's Hospital.  Jadira weighed 5 lbs, and Joscelin weighed 4 ½ lbs.  They were both born with imperforate anus, congenital scoliosis, and renal dislocation. 

A day after their birth Jadira and Joscelin had a colostomy procedure.  Dr. Nitsana Spiegland, of pediatric surgery, performed the operation.  At 4 months, Dr. Spiegland performed the Pena procedure on the twins.  Jadira's anus needed minor reconstruction.  Joscelin needed much more of a reconstruction.  The girls then had dilations of their rectum every day for one year.  I was trained to do all these wonderful things for my girls to help them the best I could.

At 7 months, the girls were to have their colostomies reversed, but they were hospitalized here in Trenton at St. Francis Medical Center.  Their pediatrician, Dr. Anna Godyn, diagnosed them with having a very serious intestinal virus.  At 8 months the twins had their colostomies reversed.  We were all so happy to see them make their first bowel movement.  It was a happy time for us.  All three operations Dr. Spiegland performed were a success.  She is the best pediatric surgeon.  I would recommend her to anyone.  She is now in New York at Cornell Medical Center, if anyone is interested.

Now that we are potty training them, Jadira so far does not have a problem.  Joscelin will be seen by Dr. Alberto Pena, the founder of the Pena procedure, in New York, at Long Island Jewish Hospital, to determine if she needs to be put on a regimen for bowel management as her muscle continence is not quite as well.

Dr. Fleisher in East Brunswick, New Jersey is their Urologist.  The girls were on an antibiotic, Bactrium, for the first year.  They have had nuclear cystograms and DMSA renal scans done in their first year, and now they are tested with renal bladder ultrasound to check for reflux every twelve months on their kidneys.  So far, they are functioning normally.  Jadira's right kidney is dislocated in her pelvic area.  Joscelin has a horseshoe kidney on her left side, and they function separately.

Joscelin had a scoliosis operation June 24, 1996.  The procedure was done at Robert Wood Johnson by Dr. Andrew Bowe and Dr. Samuel Laufer of New Brunswick, New Jersey.   She had three anterior vertebrae fused using her own rib bone and anterior spinal release with disc excisions in her middle spine.  Her spinal curve is at a 50% curve shaped like the letter "S."  The procedure that was done will stop the curvatures from growing any worse.  In time, we will know if she needs another operation on her lower spine because of a few deformed vertebrae.  Her body cast was removed on November 5, 1996.  She now has to wear a low profile TLSO back brace for one year.  Jadira's spinal curve is at 30% and stable.  She, as well as Joscelin, will be checked every six months for any shifting of their spinal curvatures.  So far, none of their congenital scoliosis problems are affecting their internal organs.

Throughout everything we have gone through, it has been very hard for everyone, especially my husband to deal with all that has happened.  I have been the strong one throughout everything, and I am still continuing to be the strong one.  Two months after the twins were born, my grandmother passed away.  She left me her strength to be the strong one.  I am just so happy that she was able to hold them both and kiss them before she died.  I would call her everyday on the phone from the hospital long distance.  It was worth the $800+ phone bill at the end of two months stay in the hospital.

Hopefully, with our prayers, Joscelin will not need another operation in her lower spine, and her sister Jadira will not need any spinal operations at all.  I thank Jesus for blessing me with my three beautiful daughters and for all the support my special mom, my cousins, especially my wonderful aunts, relatives and friends have given me throughout everything.  I thank them all from the bottom of my heart.