Even today, 20 years into my career as a neonatologist, I still marvel at being able to hold tiny humans in my hand, helping them to flourish and grow. But not all tiny humans grow big and strong. In fact, in America, 1 in 10 babies is born premature. Although the birth of a happy and healthy infant can be the most rewarding experience on earth, when a baby is born preterm, not all parents are blessed with this experience. This is why prematurity awareness is so important…not just once per year or each time a sad story strikes our heart, but every minute of every day…until every baby is born healthy.
15 million babies are affected annually as a result of preterm birth. Of those, 1 million babies will not survive. Caring for and loving a preterm baby is a roller coaster ride that rarely stops…it’s minute to minute…hour to hour…shift to shift…it’s holding your breath indefinitely, and can be overwhelming for both parents and hospital staff.
So what questions might be most helpful for parents once their baby is admitted to the neonatal intensive care unit? How does a parent navigate the enormous amounts of information they are receiving almost continuously from physicians, nurses, therapists, other parents and, yes, Dr. Google? Over the years I have identified the most common questions parents ask of their care team. My hope is that these answers will help make the prematurity roller-coaster ride just a little less bumpy, and will help to slowly begin the exhaling process…and one day, hopefully, to help find your way off the ride.
Top 5 Questions Parents should ask their Neonatal Medical Team
1. What are you most concerned about today for my baby?
It seems like such a simple and obvious question, but parents and physicians are often concerned about two very different things. Parents have often heard lots of scary statistics prior to the delivery of their baby…and they continue to wonder “is my baby going to live?” Similarly, sometimes the medical team, in efforts to protect families, may not always clearly demonstrate to the family what the main concern is for the baby today, in this moment, and that information can be invaluable for families. Asking questions like this will ensure timely and efficient communication, and having more information can often times help ease your troubled heart and clarify concerns.
2. What medications is my baby receiving, and why?
When premature babies are born, it can sometimes be a life-threatening emergency. In the process of being admitted to a NICU, many forms are signed, boat loads of information is exchanged, emotions can run high, and the experience can feel like a blur. However once the dust settles, the treatment plan often changes in sync with the health of your precious baby. Take the time to regularly ask for status updates on your baby’s medications, and ask to be educated on potential side effects. If you are blessed with a healthy discharge, make sure you understand the follow-up requirements of care, and any other precautions you must take.
3. When can I hold my baby?
Often and unfortunately premature babies are too sick, too small, and have too much equipment to be held. This is understandable: the main priority of the medical team is the medical care of the infant. However, more often than not, babies can be held….and often times do better than expected when they receive TLC from loved ones. The power of human touch…the power of a parent/infant bond…s not only a parental right, but evidence has found it to be beneficial for the child. However, it is crucial to balance the need for skin-to-skin time with the overarching care plan for the child. Each scenario must be weighed carefully, but ask…and ask again…if you may have direct contact with your baby. The answer may be no today, but it may be yes tomorrow. These moments are priceless, and therapeutic for the baby, and especially for the parents.
4. If treatment is not working, what are other options?
Our healing capabilities have grown tremendously in recent years. Today we are saving babies that we could not help even 10 years ago. Surgeries are being performed while infants are still in the womb. The prevalence and consistency of breastfeeding is rising. Parents are sometimes able to live in the NICU. We are putting less babies on respiratory support. However, sometimes even our best medicines can fall short. If your baby is sick or becomes very unstable, ask your physician or practitioner if there are other options. Sometimes, risky or overwhelming options may not initially be discussed with parents. However, once you begin the conversation, you can collaboratively explore all options with your health care team. These are difficult conversations, but they are the basis for informed decision making and necessary for parents to be the best advocates for the child.
5. What are the long-term complications from this illness?
Being able to survive and thrive in the NICU is only a part of the battle. Many premature babies will go on to experience complications, such as lung disease, vision problems, growth issues, feeding difficulty, and developmental delays, to name a few. Fortunately, there are many services in place to assist families with navigating the journey after leaving the neonatal intensive care unit. It is important to be aware of possible long-term complications so that in the event these problems arise, a plan can be in place to make sure the child achieves his or her best possible potential. As the loved one and care-taker of life’s most fragile patient, you owe it to them to have the conversation.
Dr. Terri L. Major-Kincade is a board-certified Pediatrician and Neonatologist currently in private practice with Onsite Neonatal Partners. She is a nationally and internationally prominent speaker for her expertise in the field of Neonatal Palliative Care, Perinatal Hospice, and Health Disparities as they relate to poor birth outcomes. She is a three-time best-selling author (Chicken Soup for the Soul Power Moms, Thinking About Quitting Medicine, and Early Arrival, a Doctor’s Guide for Parents of Preemies). She has been happily married for 23 years and is the proud mother of a 20-year-old daughter, now a college junior and a 17 year old son, now a high school junior. [email protected], www.drterrimd.com
