A Letter from a NICU Nurse

We have met many amazing families and children on our journey with Down syndrome  over the past year. But, for families like ours, traveling down this road also introduces you to another community that you may never have expected that you would spend so much time with: the medical community. Mark was born at Johns Hopkins Hospital in Baltimore, Maryland, due to a concern that he may require cardiac surgery for a possible congenital heart defect. In what turned out to be a short albeit stressful neonatal intensive care unit (NICU) stay, we met two incredibly compassionate and loving people - our nurses, Desi and Katie. These two women guided us through a time that was filled with many different emotions, from joy to sadness to fear. We are so grateful for their devotion to their profession and their patients, including many families who have given birth to children with Down syndrome. We asked one of our former NICU nurses, Desi, to share some of her thoughts on caring for a newborn with Down syndrome and their family:

When I was asked to write something for such an inspirational community, I was hesitant at first.  As proficient as my documentation at work may be, I don’t document my feelings about the work that I do as a NICU nurse.  I document assessments, bradycardias and desaturations; I score pain and narcotic withdrawal.  But why not put into words what I love to do? And why not use this opportunity to recognize NICU parents for really having the hardest job there is.

The advice I can offer parents who may be going through a scary NICU experience or an unexpected diagnosis is to love and admire your baby just as you did before you received the news. That is the number one thing your baby needs from you. When she asked me to write for the blog, Katie didn't ask me to write about her family or Mark in particular. Of course I gravitate towards this family when I think about my work relating to caring for babies with Down Syndrome. 

I met Mark and his parents during a scary time for them in the NICU but they had long before committed to loving, admiring, and supporting their sweet new baby.  They had no prior personal relationship with Down syndrome and committed to this experience without knowing what the outcome would be.  Acceptance like this isn't always the case.  That is why this blog and the community this family has joined deserve recognition: to spread the knowledge of how wonderful it is to love a baby with Down Syndrome.

One of the most affectionate patient populations I care for are babies that are diagnosed with Down syndrome.  I have witnessed firsthand how it is in their nature to be joyous, loving and attentive.  We can't say this about all people. This diagnosis may come with a lot of fear of the unknown for parents.  However, not only has medical care advanced as we learned more about Down syndrome, but so has the support for families that may be overcome by that fear. This is because of educational and supportive communities such as the one that Mark's family working to contribute to. So parents, please, keep up the great work, because your kindness and acceptance will be contagious to the world. 

Desi Jeliazkova is a NICU Nurse at Johns Hopkins Hospital in Baltimore, Maryland. Desi took care of Mark in September 2017, almost one year ago. Nurses like Desi help many babies and their families navigate the physical, mental and emotional ups and downs that occur when a newborn is admitted to a NICU after birth. We are grateful to Desi, and the countless other NICU nurses, who care for and support families with Down syndrome during the early days of their children's lives. Thank you, Desi, for contributing to the conversation we are having about Down syndrome!