Importance of prenatal neonatology consults.
My colleagues and I were interested in what families who meet with a neonatologist before the birth of their baby with a malformation have to say about these consults. We wanted to know if they found the consult helpful and what they thought was important about the consult. We also sought their advice to improve the consults for other parents.
Not all families with a baby diagnosed with problems choose to continue the pregnancy; we interviewed those who chose to continue the pregnancy. We asked mothers and fathers if they wanted to be interviewed after they had met with the neonatologist. Surprisingly, only mothers chose to participate. We interviewed 22 mothers whose babies had been diagnosed prenatally with a number of different malformations. Mothers were interviewed after meeting with the neonatologist and after the baby was born.
Our study found that most mothers did not have any specific expectations for the consult with the neonatologist, in part because many where not aware of what a neonatologist does.
There were five main findings in this study:
(You will find quotes from different mothers in italics)
1. Preparation: Mothers felt that meeting with a neonatologist before the baby's birth allowed them to feel prepared and less anxious. They wanted to know all possible scenarios, what to expect and the plan for the baby.
It is just very reassuring to have a professional walk you through step by step what to expect.
Our baby would have been fine regardless of whether we had the consult, but having the consult put me at ease.
Touring the neonatal intensive care unit was difficult but most said it was an essential component of the consult.
Touring the NICU was extremely shocking and upsetting at first, but it was the smartest thing we ever did. It was a much better idea to get in there before [our baby was born], rather than [after] and see my child [there].
2. Knowledgeable Physician: Mothers appreciated a doctor who was familiar with their case and were distraught by receiving conflicting information from different doctors.
It was really nice to talk to one person who kind of understood and clearly had ... read the chart and knew what was going on.
The neonatologist should talk to the surgeon to make sure what she is telling the family what may happen so that misinformation isn't given. It caused a lot of anxiety, just because it was so different from what we had heard.
3. Caring providers: Most mothers described compassion and sensitivity as essential. Some mothers even changed doctors if the initial doctors was careless or insensitive.
Compassion is the most important thing. I think sometimes doctors tend to go by the textbook and forget about compassion.
4. Allowing Hope: Despite the fact that many of the babies were diagnosed with critical medical problems, some of them with uncertain prognoses, mothers wanted to be allowed to hope for the best outcome.
I understand why doctors don't want to get people too optimistic or create unrealistic expectations, but I think you can create realistic expectations, put all of the possibilities out on the line, and still be able to comfort someone in saying, "You know we're here and we're going to manage this case with the expectation of the best outcome possible."
5. Time: In this study one hour was allotted for each consult. Mothers were pleasantly surprised and valued the amount of time the neonatologist spent with them.
I like that she actually took the time to sit down.
With more problems being diagnosed during the pregnancy, doctors are faced with the challenge of meeting the family before the patient is born. Sometimes a number of different specialists meet with the parents but a neonatologist isn't always one of them. In this study, all the mothers interviewed recommended a prenatal consult with a neonatologist for families with a baby diagnosed with a malformation during the pregnancy. They explained that other doctors talked about the details of the malformation but not the care of the baby in the delivery room and the expected course in the NICU.
Advice mothers gave to doctors to improve the consults included:
* Preparing for the meeting, knowing all available patient information and talking to the other doctors caring for the patient.
* Taking the time to sit down and listen to questions.
* Tailoring the consult to the parent's knowledge base.
* Talking about all possible outcomes
* Being realistic but compassionate at the same time and allowing the family to hope for the best possible outcome.
* Touring the NICU.
In conclusion, mothers faced with the diagnosis of a problem with the developing baby described receiving unique benefits from a consult with a neonatologist. Physicians should realize the importance of preparing for the meeting, touring the NICU, being compassionate and allowing the family to hope. The way information is provided and the support given by the medical staff makes a difference to families.
Dr. Franscesca Miquel-Verges completed medical school in her native Mexico, then completed a pediatric residency at Penn State Hershey Medical Center and a neonatology fellowship at Johns Hopkins University. Currently she is an assistant professor of pediatrics at the University of Arkansas for Medical Sciences.
By Franscesca Miquel-Verges, MD
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|Publication:||Pediatrics for Parents|
|Date:||Mar 1, 2010|
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