Tips For Surviving a Down Syndrome Pregnancy

For all of the parents out there that are anxiously awaiting the birth of their baby with Down syndrome, I know how you feel because I’ve been there. I know the emotional roller coaster that you are riding. I know how you hate the unknown. There is such a wide range of abilities and health issues with individuals with Down syndrome, but you can find out very little prenatally and that’s so hard. Maybe you can get an idea of the health of the heart via a fetal echocardiogram, and maybe ultrasounds will detect or hint at other issues, but that’s really all. And as for the cognitive abilities, there is no way to tell. So instead you wait for what seems like an eternity to see that baby. In the meantime, here are a few tips to get you through the pregnancy:

  1. Allow times of grief and worry. It will come and go in waves and may especially stir up towards the end but ride the wave knowing that it will eventually pass.
  2. Do your research. I know how you’re desperately searching for answers to the questions that are spinning in your head. You’re worrying about all of the health issues that can affect your child. You’re researching what the impact to your family will be in having a child with a disability. You are wondering what the future holds for your child – what school will be like, can they have a job, what their social life may be like. You’re researching the likelihood that your diagnosis is a false positive and probably holding onto a little bit of hope that the doctors who gave you the diagnosis are wrong. This is only the beginning of the Google research you will do. Google will be your new friend, your confidant and therapist. As soon as a question pops into your head you will reach for your phone or computer and start asking Google questions. Don’t spend too much time googling medical conditions that are not likely to happen. And remember, a lot can happen with Down syndrome but not all of it will happen to your child.
  3. Get connected. Contact your local organization or the National Down Syndrome Congress to get connected with experienced parents. Speaking with other parents is how you will get the most accurate and real information. They will tell you the truth. If you’re ready, meet others with Down syndrome. If you’re not ready then don’t. The Down Syndrome Diagnosis Network can also connect you with other expectant parents. Reading blogs can give you a real look at life with Down syndrome usually from a parent’s point of view but some are written by individuals with Down syndrome.
  4. Feel special. Every child is unique but yours is extra unique. 1 in around 600 births unique. He or she will be an adorable baby that will grab attention everywhere you go. This child will take you on a journey most parents don’t go on, some of it will be difficult, but the challenges this child will face will lead you to feel a love for this child that is different, more intense and hard to explain.
  5. Use this as an opportunity to educate. If you already haven’t realized it you will soon learn that there are many misconceptions about Down syndrome. Let this child be your reason to educate others.
  6. Surround yourself with people who are positive. They will give you that extra boost and recharge that you will need every now and then.
  7. Enjoy the birth because you have the gift of knowing ahead of time, and really it is a gift. You’ve waited for what seems like a lifetime for this day to come. When you finally see that baby you may momentarily forget about the Down syndrome until the nurse points out how floppy he or she is with their low muscle tone. But it doesn’t matter because you are holding your child and don’t want to let go. You think to yourself, like all parents do, that your child is perfect and beautiful, and babies with Down syndrome really are beautiful. You may not realize what could be happening if you didn’t take that blood test or have that amnio – the discovery  and initial diagnosis would likely be happening then and there. The shock and tears and confusion would begin then and go on for weeks and likely months, but instead all of that is behind you because you knew. Because of that prenatal diagnosis the doctors and nurses knew as well and so instead of sadness there is celebration. Congratulations.
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Gigi 1 day old
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Gigi 18 months old

 

 

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