November is Prematurity Awareness Month! My favorite month of the year. It’s the month that I get to share continuously why I am so passionate about the care of premature babies and their families. I’ve known that I wanted to take care of babies that can fit in your hand every since I was a very little girl…my sister was born 3 months premature and I was fascinated with the fact that she was small enough to fit into your hands. That she had started life in a plastic box. That she grew to be big and strong and that the doctors who cared for her were called neonatologists.
Even today 20 years into my career I still marvel at being able to hold tiny humans in my hand and to watch them grow big and strong. But not all the tiny humans grow big and strong. Not all the tiny humans get to go home. Not all parents experience the joy of a miracle baby who survives preterm birth. This is why prematurity awareness is some important…not just in November but every month …every day of the year until every baby is born healthy.
Today in honor of Worldwide Prematurity Awareness Day…November 17th I want to acknowledge that 15 million babies are affected annually as a result of preterm birth. That 1 million of those babies will die each year. In short preterm birth affects 1 in 10 babies. Having a preterm baby is a roller coaster ride that never stops…it’s minute to minute…hour to hour…shift to shift…it’s holding your breath indefinitely and it can be overwhelming for both parents and 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? It’s a process to be sure and every parents’, every journey is different. But I have found in speaking with parents there are few questions that might help them to navigate the roller coaster ride…to slowly begin to exhale…and to hopefully get off the ride.
In honor of the 1 in 10 babies affected by preterm birth…I the Top 5 Questions Parents should ask their Neonatal Medical Team regarding the care of their preterm infant:
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 numbers prior to the delivery of their baby…and they continue to wonder is my baby going to live? It’s helpful to ask those questions. 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.
2. What medications is my baby receiving? And Why?
When premature babies are born…it’s often a life-threatening emergency. Many forms are signed. Many conditions explained it can be a blur. But once the dust settles…if the dust settles the treatment plan often changes. You may know what medicines your baby is receiving but what are the side effects of those medications? How long does the medical team expect the baby to be on those medications?
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 initially and this is understandable, as the main goal of the medical team is to the medical care of the infant. However, I do believe that more often than note, babies can be held….and often babies do fine…sometimes better than expected. I also think that at times the power of human touch…the power of parent to bond with their infant is really a rite of parenthood and we forget the days turn into weeks and the weeks turn into months and a mother or father has not been able to hold their child. Each case scenario must be weighed carefully but ask…and ask again. The answer may be no today, but it may be yes tomorrow. These moments are priceless… and therapeutic for baby and especially parents. It can be frightening to hold a 1 pound baby but parents you can do it and your NICU staff will help you.
4. If this treatment does not work what are our other options?
Premature babies can become very sick very quickly. The field has grown tremendously even in the last 5 years we are saving babies that we would not have been able to save 10 years ago. We are doing surgeries while infants are still in the womb. We are breastfeeding earlier. Parents are sometimes able to live in the NICU. We are putting less babies on the respiratory. All very exciting but even our best equipment our best medicines will at times fall short. If your baby is sick or becomes very unstable after being stable a having been stable, ask your physician or practitioner if there are other options. Often other options are not shared initially because they may be too risky, or they may be too overwhelming for parents but alternatively often parents believe we offered everything when we may be able to offer more, or they may believe we can offer more when in fact we have offered all we can. These are difficult conversations…but they are the basis for informed decision making and necessary for parents to be the best advocates.
5. Do you anticipate any long-term complications from this illness?
Being able to survive the NICU is only a part of the battle. Many premature babies will go on to experience problems with lung disease requiring oxygen, problems with vision including blindness, problems with growth, problems with feeding and problems with over all developmental delay…even big preemies. 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 best potential.
Dr Terri can be contacted at 