When Things Don’t Go As Planned
From the time you found out you were expecting a child, you probably imagined what your child’s life would be like. What would they be like as a baby? A child? An adult? These questions, alongside a million others, have probably consumed you since those 2 little lines appeared. And while it may not be possible to plan the entirety of your little one’s life, you have probably tried to plan at least some aspects of it. So when your sweet newborn was brought to the NICU (Neonatal Intensive Care Unit), and you were told that they were going to be treated for dysphagia, it may have left you feeling as if all your plans had already been thrown out of the window . If this sounds familiar to you, you might now be feeling confused, frustrated, and alone in your situation. These are all completely normal feelings and rest assured there are many other parents who have been where you are now and have experienced all of the same emotions. Two of these parents have been kind enough to share their experiences surrounding dysphagia in the NICU and offer some advice about things they wish they had known during their NICU stay.
A Parent’s Perspective
While there are likely resources within the hospital your newborn is staying at, these resources can seem distant, intimidating, or inaccessible. In some cases there can be a relationship dynamic between health care provider and parents that may make it hard to ask questions or express your thoughts fully. And while you may have family and friends who are willing to help however they can, they are most likely unable to answer the questions you have about your newborn’s dysphagia.
The reality is, there are experiences that you may find are exclusive to parents who have had a child with dysphagia. Hearing from parents who have been through this experience can show you that there is a way to navigate dysphagia in the NICU and that there is hope for your little one to have the life you envisioned for them. And while you will always find support from other parents, you can also find support within your newborn’s healthcare team (even if it seems like they are sometimes speaking another language!).
The Speech-Language Pathologist in the NICU
You may have already noticed that while your newborn is in the NICU, there is an overwhelming number of professionals on your newborn’s health care team. This can be “reassuring knowing [your newborn is] being cared for by so many people”, as one mother described their experience, but it may also have you feeling overwhelmed and confused, leaving you unsure who exactly does what for your newborn. So when you were told that a Speech-Language Pathologist (S-LP) would be treating your newborn for dysphagia, you probably had some questions such as, How is an S-LP going to treat my baby for dysphagia?
S-LPs work in the NICU to help make decisions about diagnoses and treatment of your newborn’s feeding and swallowing difficulties. In addition, S-LPs are also there to refer your newborn to other medical professionals if needed, and to plan your little one’s discharge from the NICU . Some parents recalled that their newborn’s S-LP helped them to “bottle feed, suck a [pacifier], and encourage working on his latch [for breastfeeding]”, as well as using other dysphagia treatments, such as electrical muscle stimulation. These are only a few examples of what an S-LP does in the NICU and if you are still unsure of the role of the S-LP in your newborn’s NICU journey, do not hesitate to ask their S-LP, or any other member of their health care team, more questions.
Speak Up and Ask Questions
When asked if they could go back and tell themselves anything during their NICU stay, all parents said they wished they had asked more questions. And while there are plenty of resources available to learn about dysphagia online, the internet can be overwhelming and inaccurate or not up to date – so, again, do not hesitate to ask your newborn’s health care team any questions that you have.
Tips from other parents on how to ask your newborn’s health care team questions included writing down questions as you think of them, look at your list of questions while speaking to the health care team, and asking for clarification when the health care team’s response does not answer your question in a clear way. And while we encourage you to always ask them any questions you have, don’t forget that despite the professional and technical knowledge your newborn’s health care team has, you are the expert on your little one and you are the most important person for their NICU journey.
You Are Not Alone – Supports Available to You
Dysphagia was probably not part of the plan you envisioned for your newborn; rest assured, however, they will still be able to live the fulfilling life you imagined for them. And while each parent and child has a unique set of circumstances and experiences, you are not alone in your NICU journey. Ask your hospital if they have a NICU support group in place or click on the links below to find support online.
National Foundation of Swallowing Disorders (NFOSD) Pediatric Swallowing Facebook Support Group
Canadian Premature Babies Foundation Facebook Support Network AND Virtual, drop-in peer support groups
- Borges Nery, P., Snider, L., Camelo, J. S., Boychuck, Z., Khodary, F., Goldschleger, J., & Majnemer, A. (2018). The role of rehabilitation specialists in Canadian NICUs: A 21st Century perspective. Physical & Occupational Therapy In Pediatrics, 39(1), 33–47. https://doi.org/10.1080/01942638.2018.1490846