Down Syndrome: Five Ways to Support Parents through Pregnancy and Birth

When my husband and I went in for a routine 20-week ultrasound, we were giddy with excitement about seeing our baby. I was a prime candidate to see a Perinatologist, an OB who cares for mothers who might be high risk or have more complicated pregnancies, for a more detailed ultrasound.  In the small, dark room, the ultrasound technician moved quickly. She measured fingers and toes as we stared with love at our beautiful baby.

 Once it was done, and after a long wait, our Perinatologist came into the room and shared the results. In one breath she shared that we would be welcoming a baby girl and in the next breath, that our beautiful, perfect baby had two hard markers for Trisomy 21, commonly known as Down Syndrome. 

 The delivery of this news was both gentle and reassuring. After a few minutes,  she left the room to gather more statistics (because I needed to know how much of a “chance” the markers meant she for sure had Down Syndrome), I crumbled into the arms of my loving and stunned husband. When the doctor returned, she very gently gave us the information, discussed what it meant. She offered resources and when and if we were ready, the names of other families with babies with Down Syndrome. Her parting words to us were sincere and simply, “this baby girl is lucky to have you.”

Image by Joel Peterson Photography 

Image by Joel Peterson Photography 

 I remember leaving that appointment feeling numb. All I could do was sob. I loved my daughter more than anything and I was really in shock. The seven days between that ultrasound appointment and the phone call with our blood test results were some of the longest days of my life. They were also the most informative. I read whatever I could about what it meant to have a child with Down Syndrome. I felt like my eyes were wide open.

In the months that followed our positive blood test for Trisomy 21, our emotions were all over the board. What was beautiful was that regardless of how we felt that day, we were held and supported by our birthing community. From the way in which my doula held my hand to the midwives who treated us like any other expecting family. The positive support throughout that time truly made the difference in our journey toward the birth of our special little girl.

Image by Joel Peterson Photography

Image by Joel Peterson Photography

What I have learned since the birth of my daughter is that in my new community of parents who have children with Down Syndrome, many did not have the same positive experiences. From the lack of empathy as they learned of their baby’s diagnosis to the dismissive NICU nurses they encountered once their babies were born, they have shared how they wished they had a different story to tell.

As a birth professional myself, I intimately know the strong drive that we have to support families through the beautiful rite-of-passage of pregnancy and birth. I also know that there is so much mystery to it all and that sometimes it’s hard to find the right words or ways to respond to situations that are out of the ordinary.

It is in this hopeful spirit and at the request of many of my colleagues that I share these five ways you can support parents through a prenatal diagnosis, pregnancy and birth with a baby with Down Syndrome.

 5.  Be a good listener. Receiving the news that your baby has a 99.4% chance of having Trisomy 21 is a shock for every parent who receives the the phone call confirming a positive blood test. The best thing you can do is hold their hand and hold the space for them to process the news and what it might mean for them. Know that most parents who receive a prenatal diagnosis will go through a grieving process.  From shock, disbelief, denial and confusion to love, understanding, hope and acceptance. These emotions are all part of the process. Let them move through these emotions in a real way, tears and all.

Image by Joel Peterson Photography

Image by Joel Peterson Photography

 4.  Validate their feelings. It will mean so much more to them if you just validate their feelings, whatever they are. The most supportive thing you can say is, “yes, that is big news. Feel whatever you are going to feel about it.” Offering the reassurance that “everything is going to be okay,” while it shows your best intentions, isn’t comforting or helpful to them. You really can’t know that everything will be okay. Meet them where they are in that moment, and let them feel their way through it.

3.  Don’t be afraid to ask questions. Parents who receive a prenatal diagnosis of Down Syndrome quickly become the experts on it. They read all that they can about what birth might be like; what their baby might need and what life with a child with Down Syndrome might look like. They meet specialists and get routine ultrasounds and fetal echocardiograms. So if you have questions about what it means for a baby to be born with Down Syndrome, ask them. It won’t be the first or last time that they are asked about it.

 Or quite simply ask them, “how might I support you?”

2.  Don’t feel sorry for them.  Parents of a baby with Down Syndrome don’t need sympathy. (I can’t tell you how often I heard, “I’m sorry” when I told people that my baby had Down Syndrome.) What they need instead, is to know that you’ll support and celebrate them and their baby throughout the birthing process, regardless of the diagnosis. Which leads me to #1...

1.  Say “Congratulations!” If you meet these parents in your childbirth or prenatal yoga classes, as a doula client or in your clinic as a midwife, they have chosen to have their baby and honestly want to be treated just like any other expecting couple. The path of preparation for a birth of a baby with Down Syndrome most often looks a lot like that of a baby without it. There may be more testing, ultrasounds and monitoring but they will crave whatever normalcy you can give them during this time.

 In the end, parents of a baby with Down Syndrome are simply parents. And their baby is first and foremost a baby. While the path to birth may look different than your average pregnancy, they are still preparing to welcome a baby into the world. And they will be grateful to have love and support throughout the process, just like any other parents.

Rebecca Peterson is both a childbirth educator and yoga instructor, specializing in prenatal and postnatal yoga.  She fell in love with yoga at an early age and with a leap of faith, decided to make it her life in 2007, when she completed a 200hr Teacher Training with Shannon Paige. She has been teaching yoga classes at various yoga studios throughout the Denver Metro area since 2008. Though it was apparent that Rebecca had a passion for prenatal yoga from early on in her teaching, it was after the birth of her first child that she really stepped into guiding mothers in prenatal yoga. She completed Laura Wade Jaster’s Spiral Yoga’s Prenatal Yoga Teacher Training in 2011 and has been specializing in prenatal yoga since then. She also facilitates workshops in 200hr yoga teacher trainings focused on supporting pregnant women in regular yoga classes as well as an introduction to Prenatal Yoga. In 2011, she also became a Birthing From Within® childbirth Mentor and in 2013 completed the Advanced training with author and midwife, Pam England and Birthing From Within’s Executive Director, Virginia Bobro.  Rebecca offers monthly childbirth preparation classes for parents in the Denver area. With a true passion for mothers, birth as a sacred rite-of-passage and the transition that leads to families, she honors the journey to becoming a mother in both her prenatal yoga and childbirth preparation classes.

 You can find out more information about her on her website: sacredbreaths.com.