For New or Expectant Parents of Children with Down Syndrome

If you’ve just received a diagnosis of Down Syndrome for your child, you’re probably terrifyingly numb. All the implications are going through your mind. If you’ve had no experience in dealing with DS kids, your only reference for the disorder may come from the kid you knew in elementary school or that girl at the steakhouse who hugged your boyfriend by the salad bar (he probably looked “sad”).

You know Down Syndrome children have mental retardation. You know they often have health problems. You know what Down Syndrome looks like.

What you may not know is that every child with DS is unique in all the above areas. Some have a higher IQ than others.  Some are stronger in some areas and weaker in others. Some have all the health problems. Some have one or two. Some have none. You may not know that even the “look” varies. People with Down Syndrome take on the look of their families just like any other person. 

Right now, you may or may not know that every trial you will go through will be worth it. The idea of trials may be difficult to look beyond.  You might even be in a state of denial.

Or you’ve gotten past all that and now you just want information.

As with any newborn, the first consideration will be any immediate health issues indicated by fetal monitoring and status at birth.

If your baby has received a diagnosis of Down Syndrome or you've been informed of the possibility of it prenatally, you may have had several ultra sounds to assess your baby’s possible health issues, such as heart and kidney defects. However, prenatal ultrasounds are not always effective in diagnosing heart defects so even if it looks as though there are no issues; they will more than likely run some tests. Chromosome testing will be done if not done prior to birth, in order to confirm a diagnosis. 

You may expect to speak with a specialist or two…or three within the first few days of delivery. The most common are cardiologists, endocrinologists and geneticists.

Thyroid levels should be checked quickly because of your baby’s risk for hypothyroidism. When caught early on, the dangers of severe retardation and/or more physical issues go down drastically. The longer hypothyroidism goes undiagnosed, the more damage may be done.  Ask your baby’s pediatrician about thyroid testing.

Due to hypotonia and/or an enlarged tongue, your baby may have difficulty feeding from the breast or the bottle and may need extra time and attention in order to accomplish regular feeds.

In most areas of the United States, you will have a team of disability specialists available to you if you want them. Ask your baby’s doctor about occupation, speech, and nutrition therapies.

This is just a rough outline of what you may encounter so if you know of the possibility of Down Syndrome prior to delivery, speak to someone who specializes in Down Syndrome. Do some research online and read some books. Every baby is different and issues will vary. Still, it is a good idea to be aware of possible complications and know of resources for assistance.

1. Be proactive. Look for specialists and therapists who work with DS patients. Consult a pediatrician about possible medical issues. Go to your local Down Syndrome organization and ask questions. Find out what kind of help is available.

2. Buy at least two books about DS. If you’re buying only two, check out the two at the end of this paragraph. Those will give you a good start. You can come back for more suggestions later or visit your public library. If you don’t love your library already, you’ll learn to love it!

3. Get involved with a group for parents of children with Down Syndrome. You can find a local group and/or join a forum online.

My first-born grandchild has Down Syndrome. My daughter was the "ripe" old age of 16 when she got pregnant for Jayda and was already reeling from the idea of being a mom when the doctors told us her baby more than likely would have DS.

Not once has my daughter wished Jayda were anything but what she is. While nobody wishes to see anyone struggle with health problems and mental disabilities, I want to stress how much of a gift our Jayda has been and continues to be. 

I am miles away from my daughter and grandchildren and can't wait to get back to Tucson!