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Learn about the information contained in this website & more by visiting the Stepping Stones Early Intervention Program.

Frequently Asked Questions for Parents-to-Be:

My Blood test was positive for Down syndrome. What does this mean?
At my twenty-week ultrasound, the doctor saw several “soft markers” for Down syndrome. What does this mean?
I just had an amnio and was told my baby will have Down syndrome. Is there a chance the amnio could be wrong?
Are there other tests that I should consider before my baby is born?
Will I need to deliver in a special kind of hospital, or have specialists present at the birth?
Will my baby have to go into the NICU when he is born?
Should I have Early Intervention set up before my child is born?
How soon after he is born should I start Early Intervention?
What pediatric specialists will I need to see in the first few weeks of my baby’s life?
Will I be able to breastfeed my baby?
Will my baby be able to have visitors, and can I take her places, as a newborn?

 

 

My blood test was positive for Down syndrome.  What does this mean?
The nuchal translucency test, the triple screen and the quad screen are all screening tests—that means they tell you the odds that your child could have Down syndrome.  There is no “positive” blood test for Down syndrome so what you probably have is an elevated risk factor.  The only way to know for sure is to have a diagnostic test—either a Chorionic Villus Sampling (also known as a CVS) or Amniocentesis (Amnio). 
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At my twenty-week ultrasound, the doctor saw several “soft markers” for Down syndrome. What does this mean?
It does not mean for sure that your child has Down syndrome.  There are a few soft markers such as nuchal fold thickness (skin behind the neck), cardiac defects, duodenal atresia, short femurs, etc., that indicate an elevated chance of Down syndrome. 
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I just had an amnio and was told my baby will have Down syndrome.  Is there a chance the amnio could be wrong?
An amnio, like a CVS, is 99.9% accurate.
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Are there other tests that I should consider?
Your OBGYN may suggest that you have a pediatric cardiologist perform a fetal echocardiogram to rule out a cardiac malformation.  A gastro intestinal screening of the baby while in utero is also often recommended to parents.
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Will I need to deliver in a special kind of hospital, or have specialists present at the birth?
Generally, no.  Though you may want to make sure that the hospital has a NICU, due to possible cardiac complications.
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Will my baby have to go into the NICU when he is born?
Not necessarily.  Like any newborn baby, if the baby presents with a medical issue that warrants hospitalization, the baby will be admitted to the NICU.  The diagnosis of Down syndrome alone does not mean your baby has a medical condition. Some doctors will admit a newborn baby with Down syndrome to the NICU for observation.
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Should I have Early Intervention set up before my child is born?

The advantage of knowing ahead of time that your child will have Down syndrome is that you can have these services in place before he/she is born, so yes, please do get them set up by contacting Judy Bellina at the Stepping Stones Early Intervention Program: 973-535-1181 ext. 1223.  Through the Stepping Stones Early Intervention Program you and your baby will be a part of a nurturing, supportive, and learning environment.  Parents have consistently reported that – whether their child is in utero of a few weeks old – the knowledge and support received by our professional staff was invaluable.

In addition, you may want to obtain Early Intervention services through the state by contacting your county Special Child Health Office.  The Early Intervention services offered through the state are provided only in the “natural therapeutic setting” – ie. home or day care.

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How soon after he is born should I start Early Intervention?
For actual therapy provided to your child, no earlier than eight weeks of age; however parents often start attending the Stepping Stones Early Intervention Program as early as a few weeks after giving birth.  Parents receive therapeutic guidance regarding possible issues with their child’s sucking from the bottle or breast, positioning, and/or just support.
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What pediatric specialists will I need to see in the first few weeks of my baby’s life?
The National Down Syndrome Congress recommends the following evaluations to take place within the first six months of your baby’s life: Thyroid levels by a pediatrician, cardiology, ophthalmologist, audiologist, For more information on the recommended screenings your child should have at various ages, refer to www.ndsc.org for more detailed information on health guidelines.
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Will I be able to breastfeed my baby?
Breastfeeding may be challenging in the beginning for a baby with Down syndrome, but it is a very real possibility.  As you get to know your know little one, you will discover that babies with Down syndrome have physical characteristics that may have an impact on breastfeeding.  Since babies with Down syndrome often have low muscle tone, good head support is important while he/she is breastfeeding.  Likewise some babies may have a protruding tongue thrust causing some difficulty with latching on properly.  You may be able to benefit from the support provided at the Stepping Stones EIP or from a La Leche League group.  Every baby is unique even though she may have Down syndrome and sometimes a baby will breastfeed well quickly, and sometimes it takes a little time for breastfeeding to become well established. 
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Will my baby be able to have visitors, and can I take him places, as a newborn?
Follow your Doctor’s recommendations about visitations.  Please note: having the diagnosis of Down syndrome does not affect anyone visiting with your baby or you taking your baby outside to places.  As you would with any child, follow your doctor’s guidance regarding visitors and taking him/her places. 
 

For parents who are informed that their child has Down syndrome while in utero, it is a difficult time.  “Walk the path you’re given” is one families’ experience during this time period.