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5 Things Parents Who Receive a Prenatal Down Syndrome Diagnosis Should Know

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I’ve spent a lot of time thinking about what I needed to hear after we received our prenatal diagnosis. I didn’t know anyone who had a child with Down syndrome at the time, so I had no one who actually knew what I was going through to speak encouragement into my life. My friends and family were amazing, but they didn’t truthfully know what it was like to raise a child with Down syndrome. I knew I needed to hear some words of encouragement from people who understood, so I turned to the only place I could think of: the internet. I read blogs, but a lot of parents received a postnatal diagnosis.

I want to give some advice to those who just received a prenatal diagnosis. To those who still have weeks or months to sit with the information they just received and wonder what their baby will be like when they are born.

1. It’s OK to grieve.

Looking back, it seems silly that I grieved for so long, but it was an essential part of my healing process. I will admit to anyone who asks, I was upset when we received her diagnosis. I was angry. I was broken. I didn’t understand why me. I was young, I thought only older women had children with Down syndrome. I spent a lot of time crying, and when I wasn’t crying, I was angry. I told everyone I was OK, but I wasn’t. To be honest, I wasn’t really OK until months after my daughter, Hannah, was born. It took a long time to accept her diagnosis, and I came to find out that’s normal. Knowing that other moms had the same emotions and thoughts as I did was comforting. I no longer felt like I was some monster of a mother who didn’t love her child. In time, I came to the point where I could celebrate Hannah’s diagnosis, but it took time. It might take time for you, too. That’s OK. Know that you are not alone in that.

2. Your baby will first and foremost be a baby.

I think it was my OB who told me that even though Hannah had Down syndrome, she was still just a baby who would need all of the typical baby things when she was born. I remember thinking she was mistaken. I thought our lives would revolve around her having Down syndrome. I thought it was the only thing I would see every time I looked at her, but the moment she was born, I knew exactly what she had meant. Yes, I had to worry about her health from the moment she was born, but I didn’t think of it as being because she had Down syndrome, I just thought of it as my child being sick and needing medical care. When Hannah was born, I went into the full mommy mode just as I had done with my son six years earlier. Trust me when I tell you that you will take care of your baby just the same as any other baby. You will see them as your baby first.

3. You are strong enough to handle this. 

One of the things I told myself over and over again was that I was not strong enough to handle a baby with Down syndrome and a congenital heart defect (CHD). I would have bet my life savings that I would not be able to get through my baby being in the NICU or having open-heart surgery; I just wasn’t that type of person. I had always been absolutely amazed by the moms who made it through their children’s NICU stays. I had always said I could never handle that, but here I am, still surviving 15 months into this journey. I have survived, and thrived (mostly) through things I thought only supermoms could make it through, and you will, too. You will get through it because you love your baby. I would never say it hasn’t been difficult, it has been. There have been many, many tears along the way, but each time we face a challenge we all become stronger and wiser. I wish I knew then what I know now. I have learned so much through the trials; they are important, and you will learn how to deal with them and hopefully thrive through them.

4. You are your baby’s biggest advocate.

You will make mistakes, as everyone does, you will learn from experiences along the way, but you need to believe you know what is best for your child from the start. I never would have thought I would be arguing with NICU doctors a week into Hannah’s stay. I have a lot of respect for those in the medical field, and after all, I am “just mom,” but I quickly learned that if I didn’t stand up for Hannah, no one else would. Being respectful is so important, but if you don’t agree with a test they want to perform, question it. If you don’t think your baby is ready to be discharged, ask them if they believe your baby has met their discharge criteria. You know your child best, don’t ever question that.

5. Enjoy the time you have before your baby is born.

I’m a researcher by nature. I enjoy doing it, and it puts my mind at ease (mostly). So, I did a lot of research when we received Hannah’s diagnosis. I would say I did too much research. You will know what to do when your baby is born. I think it is absolutely important to have a basic understanding of some things to expect, such as hypotonia, difficulty feeding, jaundice, and if your baby will be one of the almost 50 percent of babies with Down syndrome who has a congenital heart defect. Aside from the basics though, hours of research is unnecessary. Instead, enjoy the time you have before they are born. Every baby is different, and every baby with Down syndrome is different. Don’t spend time worrying about what you can’t change, and what is uncertain.

Originally published: April 26, 2018
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