The Long Road Home

The Long Road Home
How to Navigate the first year of specialists after discharge
Preemie Magazine
July/August 2007
By Pamela Appea

Bridget Sabo, a mother of a preemie in Minneapolis, MN, said her 17-month-old son Anton, didn’t see “many” specialists in his first year after being discharged from a 49-day stay in the NICU. Like most preemie parent who have been a part of the specialist parade, “many” is a relative term.

The reality is, like many caretakers of preemie babies, Sabo and other family members shepherded her son to a parade of doctors and specialists in his first year. Anton, born at 30 weeks, was on oxygen during his NICU stay. After he left the hospital, Anton saw a pediatric cardiologist and a pediatric ophthalmologist for routine visits, as well as a cranial specialist for a temporary head condition.

In the early months, Anton had a mild case of gastro esophageal reflux disorder (more commonly known as GERD) and was on Prisolec, a medication to lessen the symptoms. Other specialists, including a nephrologist, also treated him during a hospital stay for a kidney infection. Although Anton is now a healthy and happy toddler, with no chronic medical conditions, he continues to attend physical therapy appointments that focus on his general gross motor abilities.

“Anton is unusual for a preemie in how fast he has grown. He started at 4 lbs., 6 oz. and now at 1 months actual, is in the top 80% for height and weight,” said Sabo. “It’s a bit frustrating because no one thinks he’s a preemie so they forget to give the benefit of those missed 2 ½ months.”

Looking back, Sabo believes the worst is behind them. There are, however, many mothers, fathers and other caretakers of preemies who experience significant frustration and anxiety. This is particularly true in the first year, when parents are trying to figure out what specialists they should see, when they should see them and how to juggle various appointments with everyday commitments.

Prioritize the Specialists

According to Dr. Cami Martin, director of research for the infant follow-up program at Harvard Medical School and an attending neonatologist at Beth Israel Hospital in Boston, the logistics of making specialist appointments, multiple competing medical appointments, long travel times, and other issues—including figuring out what is covered by insurance and what is not—may seem to be overwhelming to many parents of preemies.

Martin’s colleague at Harvard Medical School, Dr. Pankaj Agrawal, an instructor in pediatrics and a specialist in Newborn Medicine, stated the earlier a preemie is born, the more likely they will have frequent across-the-board specialist visits.

“It all depends on the gestational age at birth. The risks are much higher, for example, for a baby born at 24 weeks versus one born at 32 weeks,” Agrawal said.

The list of conditions requiring additional attention from specialists is daunting. Some of these conditions include continued oxygen dependence, hydrocephalus (when excess fluid accumulates in the brain), brain bleeds, or retinopathy of prematurely (see related story p. 46.) As a general rule of thumb, parents with younger preemies who have experienced longer NICU stays should expect to see more specialists after discharge.

“To minimize the post-NICU experience, it is critical to include the involvement of an Early Intervention program for full assessment of motor, mental and behavioral milestones by a physical therapist and psychologist at regular intervals,” said Agrawal.

Martin, also the author of the academic text Neonatology Review, also felt developmental and behavioral issues are essential.

“It makes sense to prioritize. Parents may see a pulmonologist, a cardiologist, their pediatrician … but in the long run, developmental and behavioral appointments are just as important as the medical commitments,” said Martin. “Parents shouldn’t feel they have to wait before a developmental delay is recognized. They should be proactive in calling the Early Intervention office that services their community.”

Annual Considerations

Winter can be a challenging time for preemies who may get sick with colds or worse conditions like respiratory syncytial virus (RSV).

University of Chicago Hospitals pediatrician Dr. William “Corey” Jordan, who sees many preemies come into the emergency room at various hospitals throughout the Chicagoland area, said he sees many preemies return to the hospital after they’ve been discharged from the NICU.

“Some preemies suffer from infections such as RSV, which commonly affects neonates during the fall and winter seasons. Many will receive monthly Synergis shots to protect against RSV,” Jordan said.

Sabo’s son Anton was lucky in that he only had a few mild colds. A feat she credits to breastfeeding and having a “lock-down” on his exposure to germs and viruses during his first few Minnesota winters.

Other Conditions

Jordan added that in addition to RSV and other issues, simple things may be taken for granted with healthy infants [that] may be more difficult for a preemie. For example, feeding, as well as sucking and swallowing coordination, can pose difficulties that could lead to a problem with weight gain. “Adequate nutrition is necessary for preemies to continue their neurological development.”

Preemies’ weight and nutritional intake should be carefully monitored by parents and the child’s pediatrician. In the case of reflux, failure to thrive, failure to gain weight and basic developmental issues may be compromised if parents don’t seek professional help.

In the case of gastrointestinal (GI) issues, like GERD, Dr. Ben Gold, professor of Pediatrics and Microbiology, director of the Division of Pediatric Gastroenterology, Hepatology and Nutrition at Emory University in Atlanta, explained that all physicians involved in the management and care of preemies should exercise a multidisciplinary approach.

“If the preemie had gastrointestinal problems in the newborn nursery, particularly those that required a GI consult in the nursery, the baby should be followed regularly by a gastroenterologist,” Gold said.

It’s up to a specialist to work hand-in-hand with parents and the pediatrician to see if the prescribed medicines are working well, he said.

The Power of Time

Many parents, including the Sabos, are relieved to find as their preemie grows, they will likely outgrow reflux and other related GI problems.

Likewise, preemie parents may find the majority of non-routine medical specialist visits will begin to taper off after their baby reaches 12 months. However, other parents of preemies who were born smaller and stayed in the hospital longer may find the specialist parade doesn’t taper until after 2 to 3 years.

Sabo’s son is case in point, as the family pediatrician no longer adjusts Anton’s age to account for his prematurity.

“I would encourage parents to make sure all their questions are answered to their satisfaction and to push for another specialist consult with someone if they aren’t comfortable,” Sabo said. “Thankfully, we have a lot fewer issues now that he is older.”

In hindsight, most preemie parents believe it wasn’t so bad. Just take a deep breath, ask lots of questions and get the best care for your preemie.


A Crash Course in Specialists
Your preemie might see one or more of these specialists in the first year post-NICU.

A pediatric cardiologist evaluates and treats hearts and heart disease. Most preemies without previously diagnosed or suspected heart conditions don’t typically require a routine visit.

A pediatric gastroenterologist specializes in conditions of gastrointestinal (GI) track, including the esophagus, stomach, intestines, pancreas and the gall bladder. For example, a gastroenterologist may treat digestive issues including GERD. If your child has a serious gastro-intestinal disorder, expect to see your GI track specialists frequently in the first year, and perhaps beyond.

A pediatric pulmonologist specializes in respiratory/breathing disorders, including asthma. If your child has serious asthma or respiratory issues, you may end up seeing your child’s pediatric pulmonologist as often as is needed, particularly during the winter months or the spring allergy season.

A pediatric ophthalmologist specializes in eye care and diseases of the eye. Expect to see your ophthalmologist at least one time for a routine visit. If problems such as retinopathy of [the eye] are discovered, your visits will drastically increase.

A pediatric dentist is what it sounds like—a dentist for kids. It’s recommended that your child see a pediatric dentist by 12 months, even if your preemie doesn’t have any teeth yet.

A speech and language therapist evaluates and treats communication disorders and swallowing problems that may be linked. If your child is evaluated and diagnosed with a speech/language delay, you may have weekly visits to your speech/language therapist.

A pediatric physiotherapist/physical therapist treats gross motor delays or disorders. As is the case with speech/language therapy, therapists may recommend that your schedule weekly visits for your child if your child is diagnosed with low muscle tone or is not meeting age appropriate targets for head control crawling and/or walking.

Originally published July/August 2007