The latest news on premature birth is almost all good, with miraculous medical advances promising a better, brighter future. Still, preemie parents often suffer from feelings of powerlessness and confusion.
Below is a conversation with Frank P. Manginello, M.D., co-author of “Your Premature Baby” and director of neonatology at Valley Hospital in Ridgewood, New Jersey, for an update on the best way to care for a preemie and catch up together. (Printed in a Sidelines Organization publication).
Q. How has the outlook for preemies changed in recent years?
A. In the past 10 years we’ve halved their mortality rate. Babies born at 26 weeks or later and weighting more than 2 pounds, 3 ounces now have a 95 percent or greater survival rate. Those born earlier (and weighing below 1 pound, 10 ounces) have a 1- to 50 percent survival rate.
The later a baby is born in the pregnancy, the less chance there is that he will suffer from a disability. A baby born after the 30th week of pregnancy has less than a 10 percent chance of suffering from a disability; even those born as early as 26 weeks have only a 20-40 percent chance.
Thee success rates are due to our advanced prenatal techniques and from our ability to improve the intrauterine environment. Medications for toxemia, a maternal condition that slows down vital nutrients to the bay and advances in ultrasound and amniocentesis procedures offer us valuable information. Refinements in helping babies breathe have also been enormously helpful. We’re now able to inject Surfactant, a replacement for a chemical that preemies lack, into the airway- which decreases their respiratory distress in the first days of life. Finally, all of the vital nutrients –protein, fat, minerals, and vitamins –that full-term babies get by mouth, preemies receive intravenously.
Q. Aside from weight, what determines whether a preemie will ‘make it’?
A. If a baby in the neonatal unit doesn’t have any seizures, infections, severe hemorrhages, or respiratory problems, and hasn’t been in a coma, then it’s likely that he’ll do well. Babies who have suffered from some of the above may survive but can also be left with some type of handicap.
Q. What conflicts are faced when medical heroics will most likely result in a bay being alive but severely disabled?
A. As doctors, we’re able to offer statistics about the likelihood of survival and leading a relatively normal life. If parents want everything done to save the baby, then a doctor doesn’t have a choice. But, if they don’t want anything else, such as a resuscitation, then a doctor may offer no other care. If there’s disagreement, the couple may want to opt for another doctor or hospital. Useful advice can be sought from the hospital bioethical committee, a priest or rabbi, even an objective relative.
Q. What are the special needs of premature babies once they go home?
A. Their first though it, “What did we do wrong?” Generally, unless they’ve been abusing drugs or alcohol, they’ve done nothing wrong. But because a premature infant may have to stay in the hospital for a few months, the separation can be very hard. I encourage parents to call the hospital whenever they want –even at 2 a.m. –if they’re worrying. Parents also should not hesitate to ask questions.
Q. What can parents themselves do for their premature infant?
A. There are many ways for parents to be involved in the baby’s care in he hospital. Parents can stroke the baby, talk to her, help with feedings, diaper her, and bring little gifts and cards. I encourage a mother who wants to breastfeed to express milk until the baby is ready to either nurse (usually at 4 pounds) or suck from a bottle (usually at 3 1/4 to 3 1/2 pounds).
Q. What family pressures do parents face with a preemie in the hospital?
A. Parents become so consumed that they often forsake the rest of the family. Sometimes I advise a parent to take a day off from visiting the hospital to spend time with an older child. It’s important to help the sibling feel included. Any child older than 3 can probably come into the nursery and see what’s going on. Letting her talk about her feelings can help.
The deluge of calls from well-meaning friends and relatives can feel more irritating than supportive. Parents should ask them for assistance whenever necessary.
Q. Should parents seek counseling?
A. Plug into the services available at the hospital. Most medical centers organize support groups, and have on-staff perinatal social workers, pediatric psychiatrists, and counselors. In selected cases, a physical therapy program for the baby may minimize the likelihood of early motor problems, and help with abnormalities that may develop if he doesn’t use certain muscles.
Q. What should parents keep in mind about a preemie’s progress?
A. You have to think in terms of “adjusted age”: If your baby was eight weeks early, adjust your expectations by two months. So you would expect a 4-month-old preemie to act like a full-term 2-month-old.
The danger for parents of a preemie once they baby is home is to either feel overwhelmed by the infant’s needs or to become overprotective. Once a baby has reached “full-term” (the normally anticipated age of birth – between 38 to 42 weeks), and she is basically healthy, parents should feel free to take their child out of the house, as they would with any baby.
It’s essential to maintain a positive but realistic attitude. Parents should talk to others who’ve been through this, relatives who are concerned but he some objectivity, and any counselors available.
Finally, as you ride the inevitable roller coast of highs and lows, try to maintain a “one-day-at-a-time attitude.