A Mother's Love.

A mother's love.  Something we take for granted.  As a parent, we treasure moments with our children.  First  smiles, first words, first dates........  Here is a very sad Mother's Day story.  But a story of love and courage.

This is what being a mother is all about.

Courageous cancer patient, 32, who lived for her baby with Down syndrome passes away on Mother’s Day 

Jorie Rogers of Ladue, Mo., was thought to be infertile when she became pregnant with son Tristan. The family celebrated the boy’s first birthday in March.

BY SASHA GOLDSTEIN / NEW YORK DAILY NEWS

SUNDAY, MAY 12, 2013, 7:46 PM

On Wednesday, Jorie said on Facebook that she had been given one to two weeks to live.

Jorie Rogers just wanted to live long enough to celebrate her son’s first birthday.

She got her wish, but the mother who wasn’t supposed to be a mother, the mother who wanted only the best for her miracle baby with Down syndrome, lost her battle with cancer on Sunday, her second and final Mother’s Day.

After the birthday party, Jorie said she wanted Tristan to know how hard she fought to be with him.

"It's very special because not only are we celebrating my son's first year and everything that he had to go through to get here, but it's the one birthday that I'll get with him," Rogers said in March when she held a carnival-themed party for her son, Tristan. "And we get to celebrate the one year that we had together."

ABBIE RUDOLPH/ABBIETAKESPICTURES.COM

Jorie Rogers was believed to be infertile after her radiation treatments but, after marrying high school sweetheart George Rogers, discovered she was pregnant.

She had stopped treatment in March after doctors told the Ladue, Mo., mother that her paraganglioma, a rare form of cancer that caused dozens of tumors in her body, had advanced to a point of no return.

KSDK

The charity 3 Little Birds 4 Life made the birthday party come true. The Illinois-based nonprofit’s founder has vowed to continue helping the family “in any way possible.”

“They’ve given me one to two weeks left,” Rogers wrote on her Facebook page on Wednesday. “I guess if anyone wants to drop by for a visit sometime now would be the time to do it. I also realize that death is just too (scary) for some people to face in person and if that’s you, that’s ok too.”

Rogers’ story is both heartbreaking and heartwarming — a life lived to the fullest but one also cut short.

KSDK

Jorie Rogers took to Facebook on Wednesday to ask people to make their final visits with her.

The 32-year-old’s radiation treatments were supposed to leave her infertile. But after marrying her high school sweetheart, George Rogers, Jorie found out that she was pregnant. After their baby was born, the couple learned that Tristan had Down syndrome.

KSDK

Dad George holds Tristan as Jorie and the family enjoy the birthday party.

Plagued by medical bills, the Rogers called upon Illinois-based nonprofit 3 Little Birds 4 Life, an organization that grants people with cancer a wish. Jorie’s was for little Tristan to have a first birthday to remember, a carnival with popcorn machines, snow cones, clowns, jugglers and a bounce house.

ABBIE RUDOLPH/ABBIETAKESPICTURES.COM

Tristan with dad George Rogers.

Her wish — and Tristan’s — came true, and during a stretch of dreary late March weather, the skies cleared for the big day, leaving the 70 guests basking without jackets in the Midwestern sunshine.

"I want him to be able to look back on videos and pictures from today and hear the stories about today and for him to know how much his mom loved him,” Jorie then told KSDK-TV. “And for him to know how hard his mom fought to be here for him."

ABBIE RUDOLPH/ABBIETAKESPICTURES.COM

Reflecting on the birthday party’s significance, Jorie offered, “I want (Tristan) to be able to look back on videos and pictures from today ... and for him to know how much his mom loved him.”

Less than two months later, cancer claimed Jorie’s life. On Mother’s Day, no less.

Ashley Swip, 3 Little Birds 4 Life’s president and founder, said Jorie had been suffering the last few weeks. Jorie’s husband, George, called Swip on Sunday morning and broke her the news.

ABBIE RUDOLPH/ABBIETAKESPICTURES.COM

Burdened with medical bills, Jorie Rogers called upon a charity that grants cancer patients one wish in order to provide her son a carnival-themed first birthday in March. It would be the only birthday she’d be able to spend with Tristan.

“Jorie was really special, and today’s been really bittersweet,” Swip said. “I’m so glad we were able to meet her and her family. And we will continue to help the family in any way possible.”

Jorie was a member of a cancer support group on Facebook. The group’s leader, Tisa Perra, remembered Jorie on Sunday.

“Today, the world lost a valiant and courageous Pheo Trooper,” Perra wrote. “Jorie Wilson Rogers, was a loving mom, wife, sister, daughter and friend. She fiercely loved her son Tristan like a lioness. Her fighting spirit was an inspiration to many. She lived her life fully despite disease and suffering. May she rest in peace. May she be free from suffering.”

Be gentle.

Breaking barriers. It takes just one.

Today in the baseball world, one brave man is celebrated.  That man, Jackie Robinson, broke the color barrier and became the first black man to play in major league baseball.  An amazingly brave man, or just a man out to play the game he loved, Jackie Robinson is a hero in my mind.  How the world would be a different place today without him.

Apr 15, 1947:

Jackie Robinson breaks major league color barrier

On April 15, 1947, Jackie Robinson becomes the first African-American in the major leagues when he plays his first game with the Brooklyn Dodgers.

Jack Roosevelt Robinson was born into a family of sharecroppers on January 31, 1919, in Cairo, Georgia. He attended UCLA, where he became the first athlete to letter in four varsity sports: baseball, basketball, football and track. He served in the U.S. Army from 1942 to 1944 and was honorably discharged after facing insubordination charges for refusing to move to the back of a segregated bus.

After leaving the military, Robinson played shortstop for the Kansas City Monarchs in the Negro League. In 1945, he was recruited by Dodgers president and general manager Branch Rickey, who was determined to end the unwritten segregation rule in the majors. In 1946, Robinson joined the Dodgers’ farm team, the Montreal Royals, and went on to lead the league in batting. On April 15, 1947, 28-year-old Jackie Robinson made his Major League Baseball debut with the Dodgers, against the Boston Braves, in front of more than 25,000 spectators at Ebbets Field in Brooklyn, New York. Robinson played first base and went zero for three at the plate.

During his first season in the majors, Robinson encountered racism from opposing teams and fans, as well as some of his own teammates. However, the abuse didn’t affect his performance on the baseball field. Robinson played in 151 games, hit .297, stole more bases than anyone else in the National League and was awarded the first-ever Rookie of the Year title. In 1949, Robinson, who had switched to playing second base, was named the National League’s Most Valuable Player. The next year he became the Dodgers’ highest paid player, earning a salary of $35,000. In 1955, Robinson helped the Dodgers defeat the New York Yankees to win the World Series. He retired from baseball after playing his last game on October 10, 1956, with a career batting average of .311, 1,518 hits and 137 home runs.

After leaving baseball, Robinson worked as a business executive and continued his involvement in civil rights causes. On October 24, 1972, he died at age 53 from heart problems and complications related to diabetes. Robinson became the first African-American inducted into the Baseball Hall of Fame in 1962, his first year of eligibility. In 1997, on the 50th anniversary of his historic first game in the majors, Robinson’s uniform number--42--was retired by Major League Baseball.

As a parent of a child with special needs, I would love to see our children accepted into society the way Jackie Robinson finally accepted Jackie Robinson.  It was a LONG HARD road for Jackie and those that supported Jackie.  I guess this road is the road taken by us parents of a child with a special need, since our children need to be part of today;s world and a active participant in the society in which they live.

Jackie Robinson, I salute you.

Be gentle.

13 things not to say to a Mom of a child with Down Syndrome (according to the Huffington Post)

This is from the Huffington Post.  I have heard quite a few of these.  Have you?

13 Things Never to Say to the Mom of a Child With Down Syndrome

Posted: 04/09/2013 10:42 am

Written by Jeanne Sager on CafeMom's blog, The Stir.

People can say some of the most hurtful things. Think you've heard some truly awful stuff? Try being the parent of a child with Down syndrome.

Babies with Down syndrome are born with 47 chromosomes instead of 46, and the severity of their symptoms varies. But there are some pretty common physical signs that accompany Down syndrome, and that opens these kids -- and their parents -- up to everything from rude staring to downright cruel comments.

Sadly, some people don't even realize they're being offensive.

The Stir asked the parents of some children with Down syndrome to share some of the ridiculous comments they hear most often about their beautiful babies.

1. Oh, he looks so normal. Normal as opposed to what?

2. I'm so sorry. "What the hell are they sorry for?" asks Jennifer Lister, mom of little Riley, who refers to her daughter's condition as "Up syndrome." "For not being blessed themselves with a child who has UP syndrome?"

3. What's wrong with her face? Nothing! She was born that way!

4. She doesn't even look Downs. Kids with DS aren't carbon copies of one another!

5. They don't live very long, do they? Actually, medicine and science have come a long way. According to the National Institutes of Health, "Although many children have physical and mental limitations, they can live independent and productive lives well into adulthood."

6. I hate being told my daughter can grow up to be a Wal-Mart greeter.

7. What is going to happen to her when you die?

8. I hate hearing people telling me what they think he will and won't be able to do in the future when he isn't even a year old yet!

9. I find the Down syndrome stereotype ridiculous, that DS people are kind, loving, and gentle. Not my daughter. She is strong willed, defiant, and kind of a brat. Oh, and her teachers have called her manipulative from a very early age. Although I love her just the same!

10. I had someone ask me if I was going to have my son fixed so he wouldn't have kids.

11. When my child was in newborn care, another mother told me I was really lucky because Down syndrome babies are so placid. I am lucky, but not for that reason!

12. Did you consider abortion?

13. One doctor asked us if we wanted our daughter to have plastic surgery on her face.

What's the most ridiculous thing you've heard about a child with Down syndrome?

What do you think?

Be gentle.

Karen Gaffney, one of my heroes

I had the honor to meet Karen Gaffney and her father when Davey and Will were five weeks old at a conference.  I was a new parent with five week old twins.  David and I attended the conference at the invitation of our local Down Syndrome group in Reno. It was our first real experience meeting people and families with children who have special needs.  Karen Gaffney and her father were two of the speakers at the conference.  David, the boys and I ran into Karen and her dad in the elevator after hearing her speak.  I think it was one of the first times I had spoken to a person with Down Syndrome.

Here is a little bit about Karen Gaffney and the foundation that she and her family have created.

Th

The Karen Gaffney Foundation is a non profit organization that is dedicated to championing the journey to full inclusion in families, schools, communities and the workplace for people with Down syndrome or other developmental disabilities. Through a series of personal appearances, motivating speeches, video tapes and resource materials Karen Gaffney, a young woman with Down syndrome, and others like her will...Instill renewed hope for a full productive and inclusive life in the hearts and minds of new parents of a child born with Down syndrome or other learning disability.

Motivate parents to new thinking and positive action so they will begin immediately building the potential of their child day by day;

Heighten awareness and raise expectations of students, counselors, educators and those in the medical profession of the capabilities of children with Down syndrome to learn, grow and contribute in an inclusive setting;

Promote community involvement and action for the support of people with disabilities.

How did it all start?

Getting started on a non-profit organization that is focused on the vast POTENTIAL of our family members born with Down syndrome was the brainchild of Dr. Jean Edwards, Professor Emeritus, from Portland State University.

We were fortunate to meet up with Jean early on in Karen’s preschool years. She was a tremendous advocate for early intervention and inclusion in a regular classroom setting as much as possible. Her theme was “readiness”. What do we need to do to get our children ready for inclusion at whatever phase of life is upon us.

Jean Edwards was a mentor to us as we navigated our way through her early education years. When Karen was attending high school at St. Mary’s Academy in downtown Portland, she was a few blocks from the Portland State University Campus. Jean regularly included Karen as a guest speaker when she was teaching students a curriculum dealing with the “Exceptional Learner”.

When Karen was a senior in high school, she had to complete a “senior project” that required teaming up with a member of the community. Jean and Karen collaborated on a project with the goal to bring positive information to families, friends and educators about the potential for children born with Down syndrome. Through the course of the project, they designed and developed the video, “Journey of a Lifetime, Beginning with the End in Mind”. In addition to the video, they teamed up to form the non-profit organization to continue the effort that started with Karen’s senior project.

Karen’s non profit, the Karen Gaffney Foundation is entirely funded by honorariums she receives for her speaking engagements, video sales, contributions from others and grants. Karen takes no payment personally for her work. Any money she receives goes into the foundation to help fund her work.

Karen Gaffney competes in open water swimming.  She is known world wide for her talent as an open water swimmer.

Now, Karen is being nominated for an honor.  And you have the chance to support her.

2012 WOWSA Woman of the Year Nominees The 2012 WOWSA Woman of the Year nominees are (listed in alphabetical order of their first name): 1. Ana Marcela Cunha (Brazil), World Professional Marathon Champion 2. Anna-Carin Nordin (Sweden), Oceans Seven Swimmer 3. Annaleise Carr (Canada), Young Marathon Swimmer 4. Catherine Vogt (USA), Dual Olympic Coach 5. Diana Nyad (USA), Xtreme Dreamer 6. Esther Nuñez Morera (Spain), Professional Marathon Swimming Champion 7. Grace van der Byl (USA), Marathon Record Breaker 8. Janel Jorgensen McArdle (USA), Swim Across America President 9. Julia Washbourne (Hong Kong), Eco-Swimming Aquapreneur 10. Karen Gaffney (USA), Swimming Philanthropist 11. Keri-Anne Payne (Great Britain), British Open Water Icon 12. Pat Gallant-Charette (USA), Channel Swimming Late Bloomer 13. Risztov Éva (Hungary), Olympic Champion 14. Shelley Taylor-Smith (Australia), Pioneering Administrator 15. Tina Neill (USA), San Clemente Channel Swimmer

Click this LINK to vote for Karen.

Be gentle.

Happy Birthday David!

Today is my husband's birthday.  I am blessed to get to spend another year with year and our children.  David is the most wonderful husband, father and my best friend.  I love you!

Be gentle.

Parent to Parent Support

Parent to Parent

Where can a new or expectant parent turn to get support from someone who has "been there, done that" when they have received the diagnosis that their child has an extra chromosome 21?  The Down Syndrome Information Alliance in Sacramento has started a program to answer this need.

Parent-to-Parent Program

Congratulations on your new baby!

The emotions you are experiencing right now are likely intense. These emotions are very typical. Although the potential needs of your baby may seem overwhelming to you right now, let us reassure you that your baby is more alike, than unlike, other babies. Your little one will bring you just as many happy moments and there will be just as many occasions for celebration.

As you begin caring for your baby, or even while you are pregnant, you might find it helpful to be in contact with another family of a young child with Down syndrome. Having just experienced many of the emotions you are now facing, they can offer a listening ear and kind words of support and understanding. A Parent Mentor can also help you make connections within your community to other families. They can answer many of your questions and be a great resource for you.

“Everyone wanted to help us, but none of our family or friends truly understood what we were going through. But our Parent Mentor understood… and gave us hope. Something nobody else could give us.” – A New Dad

DSIA’s Parent-to-Parent Program matches you with a Parent Mentor with similar experiences as your own. If you would like to be matched with a Parent Mentor, call DSIA’s Support Line at 916.842.7175 or e-mail support@downsyndromeinfo.org.

We are happy to offer new parents and baby the following gifts at no charge:

• Down Comforter Package: A New Parent’s Guide to Down Syndrome – DSIA’s parent guide that includes information on Down syndrome, messages of hope and inspiration from local families, and important resources for new parents.
• A Baby First – An original DSIA book featuring local infants and toddlers that shows the beauty of Down syndrome and presents compassionate information written by parents.
• Whispers of Hope – An original DSIA book featuring the experiences of local families raising children with Down syndrome.
• Dreams in Reality – An original DSIA video (on DVD) featuring local adults with Down syndrome living rich and rewarding lives in our community

All this and much more, all wrapped up in a handmade burp cloth for the newborn!

“I e-mailed DSIA shortly after my daughter was born. I was very anxious and needed direction after learning she was born with Down syndrome. My Parent Mentor responded to my message immediately with a compassionate response. She was so incredibly supportive. She even came to meet me and my daughter at the NICU. I knew nothing about Down syndrome at the time and my Parent Mentor patiently answered my questions. More importantly, though, I saw her passion as she spoke about her son who also has Down syndrome. As I sat there listening to her, I *knew* that I made the best decision of my life when I contacted DSIA. I’ve met so many wonderful families through DSIA and am excited for my daughter’s future. I’ve dismissed all the old stereotypes of Down syndrome and am now embracing the beautiful world that my precious daughter introduced me to the day she was born.” – A New Mom

Contact us to learn more about DSIA and how you can support our Parent-to-Parent Program. If you would like to be matched with a Parent Mentor, call DSIA’s Support Line at 916.842.7175 or e-mail support@downsyndromeinfo.org.

Be gentle.

Understanding a Down Syndrome Diagnosis

Who was there to really explain our son's diagnosis?  Yes, the doctor could tell us what our tests said.  But who was really there to help us understand?  I wish I could say we were offered tons of support and resources when we first got that diagnosis.  I wish someone could have been there to guide us through our confusion.  I wish we had been offered a place to go to get information.

The Joseph P. Kennedy Foundation has a wonderful booklet available to assist new parents and parents to be understand the scary words that have just been said to them about their child.  They don't have to be scary words.  And I am glad that there are resources that are being developed to help these parents.

About the booklet.

The Joseph P. Kennedy, Jr. Foundation’s Understanding a Down Syndrome Diagnosis is an accurate, balanced, and up-to-date booklet for use when delivering a diagnosis of Down syndrome. The booklet is the only prenatal resource to have been reviewed by representatives of the national medical and Down syndrome organizations and is available in both print and digital formats. You can request a printed copy through your medical provider or download an ePub for your smartphone, tablet, or desktop.

Understanding a Down Syndrome Diagnosis covers the following:

• Available health and education services;
• Common medical conditions for babies with Down syndrome;
• Information about pregnancy options;
• Helpful resources about the condition;
• Spanish translation included in all booklets;
• Optimization for different reading levels.

Download the book for free HERE. 

A little about the organization.


Statement of Philosophy
The Joseph P. Kennedy, Jr. Foundation believes that persons with intellectual disabilities have the ability to live, learn, work, recreate, and worship like everyone else. We recognize that people with intellectual disabilities may need assistance to do these things.
We believe that families of people with intellectual disabilities, especially families of children with intellectual disabilities, benefit from support and information to successfully include their family member with mental retardation (intellectual disabilities) in the everyday activities of their community.
The Foundation works to improve the lives of people with intellectual disabilities and to prevent the causes of intellectual disabilities.

Goals 

1. Enhance the quality of life of persons with intellectual disabilities and their families.  
2. Provide seed funding to capitalize on Federal and/or State or Local spending on behalf of persons with intellectual disabilities and their families by funding initiatives that evolve beyond where existing programs are going, and do not duplicate public efforts.
3. Increase professional and public awareness of the needs of persons with intellectual disabilities and their families.
4. Work to reduce the incidence of intellectual disabilities.

And the brochure created by this foundation have received kudos and endorsement by prominent physicians.  Read about it in this recent press release.

Prominent Physicians and Scholars Endorse the Joseph P. Kennedy, Jr. Foundation's "Understanding a Down Syndrome Diagnosis" at the University of Kentucky's HDI

Prominent physicians and academics nationwide are endorsing the Joseph P. Kennedy, Jr. Foundation's "Understanding a Down Syndrome Diagnosis" as the most balanced material that healthcare providers can provide to expectant parents following a prenatal diagnosis at www.lettercase.org.

Lexington, KY, October 10, 2012 --(PR.com)-- Prominent physicians and scholars nationwide are endorsing the Joseph P. Kennedy, Jr. Foundation's "Understanding a Down Syndrome Diagnosis" as the most balanced material that healthcare providers can give to expectant parents following a prenatal diagnosis. The complete list of physicians and scholars can be found at (www.lettercase.org). The booklet was uniquely prepared in 2010 with assistance from the Down Syndrome Consensus Group, including representatives of the American Congress of Obstetricians and Gynecologists, the American College of Medical Genetics and Genomics, the National Society of Genetic Counselors, the National Down Syndrome Congress, and the National Down Syndrome Society.

Dr. Brian Skotko, Co-Director of the Down Syndrome Program at Massachusetts General Hospital states, "When an expectant couple receives a prenatal diagnosis of Down syndrome, providing accurate, up-to-date, and balanced information about Down syndrome becomes an important and immediate goal."

Dr. Alison Piepmeier, Director of Women's and Gender Studies at the College of Charleston, says, "Learning through prenatal testing that your fetus has Down syndrome can be unexpected, confusing, and difficult for many potential parents. In this booklet, those individuals will receive the most up-to-date information about what having a child with Down syndrome might be like for them as well as discussion of other options - including termination and adoption. Photographs of children with Down syndrome at play allow readers to observe life with the condition. It's a beautifully done book with many resources and a fair and unbiased look at the options most individuals will consider after a diagnosis of Down syndrome. I would recommend this book to any person needing more information about a diagnosis of Down syndrome."

A recent study published by Levis et. al. in the American Journal of Medical Genetics found that the booklet parallels what women who are or may become pregnant said they need to know about Down syndrome, including "clinical information about DS, information about families with a child with DS, the degree of medical complications, resources for parents, among many other topics. The booklet also contains many photographs of children with DS engaging in everyday activities."

"Understanding a Down Syndrome Diagnosis" is administered by the University of Kentucky's Human Development Institute (HDI) and is available at www.lettercase.org as a free digital download. Medical professionals can request a free printed copy up to every two months to share with their patients, and high quality printed copies are also available for public purchase. All proceeds from book sales are used by HDI to continue to support the program.

Contact Information

University of Kentucky Human Development Institute

Stephanie Meredith, Lettercase Program/Medical Outreach Director

404-828-0290

Contact

lettercase.org

Be gentle.

What is good information about prenatal testing?

Parents and prospective parents need more information about testing and development of children.  But it also needs to be good information.  Is this good information?

Testing times before a baby

Jaya Shroff Bhalla, Hindustan Times
September 09, 2012

Are you pregnant or planning to have a baby? If you are, just the tests to ensure your baby is free of inherited genetic disorders can run up to Rs. 2 lakh, depending on your age and the history of diseases in both families. Modern diagnostic tools are helping gynaecologists identify an

increasing number of foetuses with genetic disorders. Women choosing to conceive after the age of 35, unhealthy, inactive lifestyles with poor diet, smoking and alcohol, and yet unidentified environmental factors are increasing the number of foetuses being identified with genetic disorders. “We usually advise women to undergo certain tests even before they conceive to identify problems in the parents’ medical history and accordingly prepare them for a healthy pregnancy,” says Dr Alka Sinha, senior consultant, foetal medicine at BL Kapur Super Speciality Hospital.

“Before conception, the parents’ medical history, blood sugar levels and blood groups should be checked along with tests for thalassaemia, immunity against rubella, HIV, hepatitis and thyroid, among others,” she says. Even high blood sugar can affect the baby’s health. In India, over 80% babies are born with congenital defects because of the mother’s abnormal sugar levels.

“These tests are repeated in the first trimester. Between the 11th and 13th weeks, we test for the double marker, which is a simple blood test along with an ultrasound nuchal scan to check for chromosomal abnormalities,” said Dr Anuradha Kapur, senior consultant, department of gynaecology at Max Healthcare. This test measures the fluid collected under the skin at the back of the baby’s neck to assess the risk of Down’s Syndrome and other chromosomal and genetic disorders.

About one in 20 women above the age of 35 years are at risk of having a baby with Down’s Syndrome. If the scan reveals a high probability of Down's Syndrome, the only way to confirm is amniocentesis, which are invasive pre-natal tests. Samples are drawn from the amniotic fluid or a piece of placenta is extracted or blood sample taken from the foetus to rule out infections.

“In India, pregnancies can be medically terminated up to 20 weeks. So, a pregnant woman must get another ultrasound done between the 18th and 20th weeks to check the foetus for abnormalities in the heart, lung or kidney,” said Dr Kapur. Closer to the delivery dates, women are asked to take sugar tests again, and after 28 weeks, undergo another Doppler test. But at this stage, even if there are abnormalities, termination of pregnancy is not an option.

That’s one reason why Delhi-based engineers Rohit and Priya Chabbra were forced to abort two foetuses after prenatal tests in the second trimester revealed that she were carrying babies with thalassaemia, a merited blood disorder. They opted for in-vitro fertilisation (IVF) the third time. IVF conception gave them the option to test for genetic defects in the baby before the implantation of the embryo, assuring them a healthy baby. Priya is expecting her baby early next year.

Pre-implantation genetic diagnosis (PGD) tests embryos within the first five days of formation using IVF for genetic disorders. Only healthy embryos that test negative are implanted. The test costs R50,000 but it’s well worth it. “Besides the money wasted, abortion causes mental trauma. We advise IVF parents with detrimental factors such as late age of conception, bad genetic family history, poor health or past miscarriages to undergo the test,” Dr Abha Mazumdar, IVF head at Sir Ganga Ram Hospital.

Prenatal FAQs

Who needs prenatal tests?All pregnant women must take several prenatal tests at different stages of pregnancy all through the nine months.

What could be the total cost of the tests?It could range from Rs. 25,000 to Rs. 40,000 depending on the centre you go to. Costs could go up to Rs. 1 lakh or more if yours is a high-risk pregnancy.

What is a high-risk pregnancy?Women who are adolescents or older than 35, have a history of premature births, have already had babies with heart or genetic problems, are carrying two or more babies, have high blood pressure, diabetes, thyroid, heart or kidney problems, cancer, HIV, hepatitis, thalassemia minor or seizure disorder.

Is IVF the only option if I have a history of pregnancy terminations because of genetic or other faults?Of course not. One can opt for the normal conception but tests for genetic disorders in the baby can only be done between the 11th and 14th weeks, which could mean another termination if the child again carries the defect.

How does pre-implantation genetic diagnosis (PGD) help?It can be done only in IVF conceptions before the embryo is implanted in the woman. With the evolution of science, one can check for genetic abnormalities even before implantation, hence preventing a case of genetic disorder in the child. 

Which are the centres offering PGD?Reliance laboratories in Mumbai and Sir Ganga Ram Hospital in Delhi offer PGD.

What are your thoughts?

Be gentle.

Educating parents about Down Syndrome!

meant to post this article about education soon to be parents about Down Syndrome, but with all the excitement of the Special Olympic State Games, I did not get a chance to comment on this.  Hopefully, the information given to parent will be true and accurate.  The information should have support groups and resources available before and after birth of their child.

Way to go Massachusetts!

Mass. Gov. signs bill on Down syndrome information

AP  / June 22, 2012

BOSTON (AP) — Massachusetts Gov. Deval Patrick has signed a bill into law that requires care providers to offer up-to-date educational information to parents whose children are diagnosed with Down syndrome.

The Democratic governor signed the bill Friday in a small ceremony with families, advocates and state lawmakers.

Under the legislation, the Massachusetts Department of Public Health must make the most recent, evidence-based written information on Down syndrome available to individuals and facilities that provide prenatal and postnatal care or genetic counseling. The information must include details such as life expectancy, intellectual and functional development and treatment options.

Lt. Gov. Timothy Murray, who attended the signing, said the new law will help ensure that important resources are available to parents.

Be gentle.

The Special Mother (or Father)

I read this short essay from Erma Bombeck long before our son was born.  Always loved it.  Often, other people will say to me and my husband, "I don't know how you do it?" or "That must be hard".  Most of the time we don't think about Down Syndrome or that our child has special needs.  We just parent our child to the best of our ability.

Yesterday, David and Davey were at Costco getting a battery for our vehicle.  They wanted to stop at the food court on the way out to get a drink.  David was pushing the cart with the new battery in it.  He gave Davey a dollar and told him to go get a soda.  David told me about a conversation he had with an older woman (she looked like someone's loving Grandma) who spoke limited English.  She told David he was a great parent and our son was beautiful.  She told David that she had a nephew "like your son".  She was sweet and truly happy to watch Davey and David interacting.  It made me very proud to listen to David tell me this story last night.  Both of my son and my husband.

Being a parent of a child with Down Syndrome was not something we had planned.  But it is something we are now.  We have a special child with special needs.  There is nothing special about me and David.  We just keep on keeping on.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.


This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?


Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.


"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."


"Forrest, Marjorie; daughter. Patron saint, Cecelia."


"Rutledge, Carrie; twins. Patron saint, Matthew."


Finally He passes a name to an angel and smiles, "Give her a handicapped child."


The angel is curious. "Why this one God? She's so happy."


"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."


"But has she patience?" asks the angel.


"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."


"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."


"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"


God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"


"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".


"And what about her Patron saint?" asks the angel, his pen poised in mid-air.


God smiles, "A mirror will suffice."




Be gentle.