THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Monday, November 13, 1995 TAG: 9511110070
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: BY PAM STARR, STAFF WRITER
LENGTH: Long : 188 lines
KATHLEEN BOYLAN was 15 weeks along in her pregnancy when she got the call from her obstetrician. I need to see you right away, she was told.
Today. In person.
Upset, Boylan called husband John and they met at the obstetrician's office. The results of her amniocentesis, a screening test that detects Down syndrome, had come back. The doctor told the couple that their twin fetuses, two girls, had the birth defect that results from an extra chromosome.
The Boylans, who have both worked with the mentally disabled for the city of Virginia Beach for more than 15 years, sat in shock. John, 41, is a behavioral specialist with Mental Retardation/Developmental Disabilities and Kathleen, 36, is a social worker for Social Services in the Child Protective Services unit. But they never expected this would happen to them.
Maybe the test was wrong or someone else's. Maybe it was all a bad dream, a big mistake. When they went home, they cried for two days straight.
Finding out that your baby has a birth defect is one of the worst things an expecting parent can face, said Dr. Thomas Montgomery, director of the Division of Developmental Disabilities at Eastern Virginia Medical School. Down syndrome is the most common chromosomal disorder, affecting one of every 800 children in the United States, Montgomery said. The extra chromosome causes varying degrees of mental retardation, certain facial characteristics and often defects in the heart and intestines.
``All mothers worry about birth defects when they're pregnant, and when there is a problem, all of their fears have been realized,'' says Montgomery, who also is the Director of the Children's Neuro-Developmental Center at Children's Hospital of the King's Daughters.
``It's a terrible feeling. I've seen it in a number of women - the child you expected is not there, and you have to realign some of those hopes and dreams.''
Twenty or 30 years ago parents didn't know until birth whether their baby had a birth defect. Today, parents who find out prenatally that their baby has Down syndrome have some tough choices. They can abort the fetus or continue the pregnancy and then keep the baby or put it up for adoption.
For three weeks the Boylans talked to other mental health professionals and their families for advice. They read reams of material about the birth defect.
But the turning point came when they called the Tidewater Down Syndrome Association (TDSA), a support, education and advocacy group for parents. They were put in touch with a couple from Maryland who has 4-year-old twins with Down syndrome. They decided to continue the pregnancy and keep the babies.
Caitlyn and Meghan were born six weeks early by Cesaeran section on May 4.
``I guess you don't know why things happen the way they do,'' conceded John, holding Caitlyn on his lap while Kathleen breastfed Meghan in their Shadowlawn home.
``I don't pretend to know if there's a grand design here, but they've brought tremendous joy into our lives.''
Kathleen said that when they made the decision to continue the pregnancy, ``something came over me.
``I felt a peace, and I knew that everything was going to be OK,'' said Kathleen as tears welled in her eyes. ``I couldn't bear the alternative. Now I can't imagine life without them. Ultimately we feel very lucky and are madly in love with them.''
The Boylans have accepted their babies now, but it continues to be a difficult emotional and physical journey.
Kathleen works days and John works nights and weekends so one or the other can be home with the girls. The Boylans take the babies to the Infant Stimulation program in Virginia Beach twice a week. The physical therapy is continued on a daily basis at home.
Babies with Down syndrome typically have poor muscle tone and developmental delays, learning to roll over, crawl and sit up much later than other children.
The girls are relatively healthy, said John, even though both have small heart defects that will need to be evaluated when they're older.
``Certainly they'll have challenges, but I believe that our babies and people with disabilities have contributions to make,'' said John.
In a way, the Boylans were lucky with the way things happened. They experienced the stages of grief - shock, denial, anger and acceptance - months before birth and were ready for the babies when they came. Some parents don't have that luxury. Pam Rhea found out hours after birth that her third baby had Down syndrome. She had decided not to undergo amniocentesis because she was only 28.
``I never thought it would happen to me,'' said Rhea, holding the squirming 18-month-old on her lap. ``But the advantages outweigh the disadvantages. My other kids do real good with her; both have a class where there is a child with Down syndrome and they have taken those children under their wings.''
For the Boylans and the Rheas, help in coping came from the TDSA. Joan Blind, the group's president, visits new parents as soon as possible after they're given the news. She brings a new-baby packet, listens to their grief and encourages attendance at a New Moms get-together or the Down syndrome monthly meeting.
Blind has a 7-year-old daughter with Down syndrome and will never forget her first reaction to Katie's birth.
``I remember thinking I'll never be happy again,'' says Blind. ``You're expecting this perfect little baby. . . . But when she was 3 weeks old, I remember saying `I can do this. It's going to be OK.' ''
One of the couples Blind saw about 2 1/2 years ago was George and Anne Fischer of Suffolk. At that time, Anne Fischer says, they were in denial. They were waiting for the results of newborn Harris' blood test.
``We were holding out that hope that the blood test would be wrong,'' admits Anne. ``Joan listened to us and wouldn't say yes or no.''
Blind thinks that being with other parents in the same situation helps new parents the most.
``It is so important for new moms to come here,'' Blind says. ``They end up seeing beautiful little babies and moms who love them. They come to realize that this is my baby and that they are babies first.''
Melissa Balsamo sat on her mother's lap surveying the frenetic scene on the floor. Rachel Rhea , a sturdy blonde in Oshkosh overalls, somersaulted across the rug and banged into 3-year-old Callieanne Coon, who was busy licking the icing off her third chocolate cupcake. Harris Fischerdanced around the living room, stopping periodically to look at 14-month-old Gabrielle Parsons.
Susan Parsons, Gabrielle's mother, was hosting the New Moms get-together this night at her home off Shore Drive. Gabrielle was the star on this particular night. Clad in a white sundress, her brown hair pulled into a ponytail, Gabrielle cooed and smiled at everyone she encountered. Susan Parsons, who has two other children, smiled indulgently at her daughter.
``When I found out (through amniocentesis) that she had Down syndrome, it devastated me,'' Parsons admitted. ``I couldn't understand how God could do this to me. Then the baby was born and she's my joy. She's a gift from God--he gave us Gabrielle for a reason.''
It has not been easy for Parsons and her husband, Dester. Gabrielle had open heart surgery at three months for a septal defect, and was just diagnosed with asthma. She attends classes in physical, speech and occupational therapy five days a week, just like Pam Rhea's daughter, Rachel. And right now Gabrielle has pneumonia. But Parsons wouldn't change a thing if she could.
``She gives me more love than I ever thought possible,'' Parsons said. ``I took life for granted before. I wake up in the morning now and can't wait till she wakes up.''
Thirteen-month-old Melissa was adopted by Debbie and Joseph Balsamo.One of triplets conceived through in-vitro fertilization, Melissa was the only one who had Down syndrome. The birth parents felt they couldn't handle the situation, Debbie said.
``I always wanted a large family and there are a lot of kids up for adoption who have Down syndrome,'' Debbie said. ``Since we knew beforehand, we didn't go through all that shock. Our boys went through the whole adoption process with us and have been super with her.''
The TDSA meetings are probably the biggest help for new parents, according to Dr. Thomas Montgomery, who is on the medical advisory board of the association and who has been dealing with Down syndrome as a subspecialist for 15 years.
The feelings that parents face are very common because babies with Down syndrome have physical features that allow them to be identified at birth, he said. But, he added, the stigma attached to Down syndrome is not nearly as prevalent now as it was many years ago.
``The most important thing for a new parent is to be able to talk to a parent who has been there,'' said Montgomery. ``No matter how compassionate we (doctors) are, we've not been there. It takes some time, but judging by the parents I've talked to, you can be happy again.'' MEMO: The Tidewater Down Syndrome Associations offers family support,
education and advocacy to enhance the lives of individuals with Down
syndrome. Meetings are held the third Thursday of every month at 7:30
p.m. at the Children's Neuro-Muscular Developmental Center at CHKD. New
moms get-togethers are held every six to eight weeks. For more
information, call Joan Blind at 479-1756 or Mary Wilt at 340-5998.
INSIDE: Educating Russians about Down Syndrome is difficult/E3
ILLUSTRATION: DEALING WITH DOWN SYNDROME
``I felt a peace and I knew that everything was going to be okay,''
said Kathleen as tears welled in her eyes. ``I couldn't bear the
alternative. Now I can't imagine life without them. Ultimately we
feel very lucky and are madly in love with them.'' - Kathleen
Boylan, recalling her and her husband's decision to continue her
pregnancy after a diagnosis of Down syndrome.
[Color Photos]
VICKI CRONIS
The Virginian-Pilot
Caitlin Boylan,left, smiles at her mother while Meghan catches a
nap.
Meghan, left, and Caitlin at 6 months with their parents, Kathleen
and John Boylan, at Infant Stimulation class.
VICKI CRONIS
The Virginian-Pilot
Pam Rhea, center, holds a sleeping Gabrielle Parsons during a new
mothers support group. Susan Parsons, left, hosted the group. To the
right is TDSA president Joan Blind.
KEYWORDS: DOWN SYNDROME by CNB