MOSAIC MOMENTS

Somewhere, maybe in many places at once, an expectant mom and dad are at their Obstetrician’s office getting some unexpected news about their baby right this minute.

They went ahead and did the test “just to be sure”, and now, this very minute, they are getting the news that their baby may have Down syndrome or mosaic Down syndrome.

Immediately following this news, the parents are trying to process the information. All the visions they had for their baby are immediately changed. Right this minute, in their mind, their baby will not grow up to be president! (not that they ever thought about their baby being president before, but the image is now there)

Right this minute, the doctor is telling the parents, “Your child will be mentally retarded. Your child will have health problems and has a strong chance for a heart defect. The divorce rate for parents of children with Down syndrome is high. Your other children will suffer because of all the attention this child will need. Your child will cause a great financial and emotional burden. Your child will not live a very long life. You will have to care for him the rest of his life because he can not live on his own. Your child with Down syndrome will suffer and will not live a fulfilling life because of all the medical and mental problems that comes with this birth defect.”

Right this minute, the parent’s hearts are dropping down to their toes. They are sad, scared, angry and confused all at once. The information they are given is too much to process. They need for this to soak in. They need to go home and hold each other and think about what all this means for their family. They want to just run away from this doctor’s words. None of this seems real and they need, more than anything, to have time to process the information.

Right this minute, the doctor does not see that the parents are ready to run out of his office. Instead, he is thinking that it is his duty to give the parents their ”options”. It is ingrained in his mind that having a child with Down syndrome is the worse thing that could ever happen to a parent. He feels as though it is his ”duty” to inform these parents of  their “options”. He tells the parents that they have one week to make their decision. He pushes just a little more saying “You can have other children; children without a disability.”

Not once does the doctor tell the parents of support and information groups. He knows about them. He knows they exist and he knows that the information he has just given these parents is out of date information. He knows he hasn’t read anything on Down syndrome since the 70’s, but in his mind, Down syndrome hasn’t changed.

Defeated, the parents go home and cry. Their whole lives have been changed with two simple words — Down syndrome.

The ending of this story can take two different turns….

After crying all the tears they could possibly cry, the parents discuss this “option” the doctor has given them. The mother says, “I don’t think I could raise a child with all the problems the doctor said he will have.” The father says, “I wanted a boy that I could play ball with outside. I wanted a boy to follow in my footsteps” They discuss the divorce issue. The problems their other children will face. All the medical problems the doctor told them about. Ultimately, they decide that since their doctor has a degree and is a specialist, surely he knows what is best. They feel as though there are no other options. They can’t imagine raising a child who will be different than other children. Defeated, they decide to abort their baby. After all….the doctor said they could always try again.

OR

After crying all the tears they could possibly cry, the parents discuss this “option” the doctor has given them. The mother says, “What if the doctor is wrong? What if our baby doesn’t have Down syndrome and the test is wrong?” The father says, “What if he does have Down syndrome, but it isn’t as bad as the doctor said it would be?” The parents discuss this further and although they are very sad and very scared they decide to search for more information online about Down syndrome. With a simple search in the Google Search Engine they find 6,580,000 entries on Down syndrome. As they search, they find some of the same things that the doctor had told them. But then, they also begin to find information from parents of children with Down syndrome. They find support groups and blogs and egroups where parents talk about their kids and share information and support. They decide to write to one of these egroups and they are amazed to find all of these parents telling them completely different things than what the doctor had said. They even found out that there was a big waiting list for parents to adopt children with Down syndrome! Finally, they decide that even though it may be difficult at first, they decide to keep their baby.

The truth about Down syndrome?

• Yes, children can have medical problems and even heart conditions. Not all do, but some do. The majority of these children are ok, even if they have a heart condition because of the medical advances all of these medical issues are treatable.

• Mental retardation? (we prefer the term intellectually delayed) Yes, children with Down syndrome can have a lower IQ, but that doesn’t mean they can not learn. They may need extra help in school and they may not learn at the fast pace that their peers do, but it is important to remember that ALL people learn at their own paces.

• Divorce Rate? Actually, parents of children with Down syndrome tend to grow a stronger bond than those who do not have a child with Down syndrome. However, if you are going to divorce, it usually has nothing to do with the child, it has more to do with your conflicts as a couple. So, if you divorce when you have a child with Down syndrome, more than likely you would have divorced anyway.

• Siblings of children with Down syndrome are probably the most passionate people on the planet. They learn compassion, understanding and they love their siblings very much. As adults, a large majority go into helping fields such as doctors, therapists, teachers and attorneys. The large majority of siblings of children with Down syndrome grow to be the most well adjusted adults compared to their peers.

• Financial Burden? If a child with Down syndrome has a medical problem or developmental delay that requires services your insurance will cover the majority of these finances. And, according to your income, you may qualify for Social Security benefits in the United States along with Medicaid to cover medical expenses. Having a child with Down syndrome is no more of a financial burden than having any other child.

• Emotional Burden? At first, you will be sad. This is hard information to take and you definitely will have a lot of questions. There are many support groups full of parents who will offer you support. You are not alone and as time passes, you will find that you don’t look at your child and think about Down syndrome. You look at him or her and you see your beautiful child. You see the great personality and the wonderful smiles. And, every time your child meets a milestone you will rejoice in all the little things that your child accomplishes.

• Your child wont live a long life? People don’t die from Down syndrome, they die from medical problems. Now we have medical advances that often fix most any medical problem. There is no reason for a child born in this century to not live a very long, fulfilling life.

• Independent Living? Not only are adults with Down syndrome living independently, they are holding jobs –real jobs!, getting married, and living very happy fulfilling lives!

If you have been prenatally diagnosed with Down syndrome, please contact the National Down Syndrome Congress.

If you have been prenatally diagnosed with mosaic Down syndrome, please contact International Mosaic Down Syndrome Association.

Also, please see this great new site DownSyndromeBrochure.com is an educational outreach of Concerned Women for America (CWA) of New York.

We are here to help you. You are not alone.