Preemies: What No One Tells Parents

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preemieDr. Jennifer Gunter is an OB/GYN who knows more than a little about preemies -- both from her medical practice and from her own amazing, chill-inducing experience.

When she was 22 and half weeks pregnant with her triplets, she went into labor. She delivered a son -- Aidan -- who died just minutes after his birth.

Then somehow, the labor stopped, and her other two babies were given the gift of almost four more weeks of gestation. Oliver and Victor were born at 26 weeks weighing just 1 pound, 11 ounces and 1 pound, 13 ounces, respectively. 

Today, more than six years later, while they have some lingering complications, they are happy, active boys.

I caught up with Dr. Gunter, who wrote The Preemie Primer, to talk more about her experience and find out what she wished she had known when she became the mother to preemies.

Were you as an OB/GYN surprised that you went into premature labor?

I was not surprised that I delivered prematurely as I knew the statistics about triplets -- essentially every triplet pregnancy is premature. What surprised me was losing my first son at 22 1/2 weeks.

Despite the risk of a premature delivery, most moms with triplets take three babies home from the hospital. I was in the 13 percent that didn't. Going into the whole experience, I felt the odds were in my favor, but it just wasn't meant to be. I was very surprised when I managed to stay pregnant with my other two boys for almost four weeks after delivering my first son.

Most of the time when the first baby delivers with a multiple pregnancy (like twins or triplets), the remaining baby or babies are born within 48 hours.

What was the most difficult part of the NICU stay with your twins?

Two things. The absolute worst feeling in the world is leaving the hospital without your baby. The night I was discharged home was the absolute lowest I felt in this whole journey. There are really no words to describe the sadness. A mother should never have to leave the hospital without her baby. The other difficult part of the NICU experience for me was the roller coaster -- one day doing okay and the next not. Sometimes there were critical ups and downs hour to hour. I think most people can adjust to news, good or bad, with time, but dealing with it in such a rapid fire way is very difficult to process.

You just have no idea what to think, and that is very unsettling.

What surprised you most about the journey?

The appalling state of health insurance in the United States. Before I had my boys, I never really had to use the system. I would hear complaints from patients about denials and appeals, and certainly as a doctor I wrote my fair share of letters for patients, but I was completely unprepared for how bad the situation really is. The hospital billed us for my son who died, even though he received no medical care.

The billing representative was terrible. I had to contact the hospital CEO to correct the matter. Another hospital sent us to collections over a chest x-ray that never even happened! And those are just two of sadly hundreds of terrible examples of the system that happened to my family alone. Fortunately, I had the medical knowledge and enough insider information to fight every incorrect bill, but you shouldn't have to fight for care or to be billed correctly. That part of the experience made such an impact on me that I devoted three chapters on the subject in my book.

What things won't people tell parents of preemie and why not?

The best insider information I can give parents is that prematurity is an ultra-marathon. The first 26.2 miles is the neonatal intensive care unit (NICU), but there is still a long road ahead when you get home.

When you are in the hospital, you have your eye on one prize: getting home. It was a shock for me how much care preemies need at home, not only just to stay alive but to catch up and thrive. Many parents are really unprepared for that second, longer leg of the journey. That is why I felt it was so important to cover care at home in my book, The Preemie Primer.

What questions do parents of preemies need to ask -- and of whom?

There are so many questions to ask, and it varies baby to baby (and sometimes day to day) what parents need to know. One good idea is to ask for a case conference on a regular basis. That is where all the team members sit down and review in detail how things are progressing. This will help keep you up to date.

Mothers should specifically ask to be screened for postpartum depression, which affects 40 percent of moms who deliver prematurely.

Postpartum depression can have very real, and long lasting physical effects on both mom and baby, but treatment can help. Many moms don't go to their postpartum check-up because they are either at the NICU or too busy at home with their baby, so they don't get screened and don't get the help and support they need.

What's the most important thing friends and family can do when a relative/friend delivers a preemie who requires a NICU stay?

Show support! First of all if you were planning on sending a gift if the baby were born at term, go ahead and send one now. Don't wait to "hear about the outcome." When you have a preemie you feel like a forgotten parent, as if you are the only girl (or boy) at the prom without a date.

If you were not planning on sending a gift, still acknowledge the birth in some way -- a card, phone call, or e-mail. Then ask what you can do to help. If you live locally, bring by some groceries, a couple of casseroles for the freezer, or offer to help out in other practical ways like cutting the grass, walking the dog, or feeding the cat. If you live far away or you don't have the money to help out financially, consider donating a unit of blood at the local Red Cross and send a little note saying you gave blood in honor of the new baby. Many preemies need blood transfusions so you may be helping a preemie in another city.

Don't ask questions like "When are they getting off oxygen?" or "When are they coming home?" Milestones may be a very long way away and being reminded of the unknown can be very painful. It is better to ask, "How can I help?" and just let your family/friends know you are there for them.

Anything else you think parents should know?

Health care providers are notoriously bad at getting vaccinations.

Preemies are at greatest risk for complications from vaccine-preventable diseases. Parents should feel empowered to ask everyone caring for their baby if they are up to date on their vaccines, especially influenza and pertussis. If not, ask them to wear a mask. Some hospitals actually have masking policies for unvaccinated employees. Parents should also make sure they are up to date on their own vaccines.

And finally, don't be afraid to speak up. You are the most important member of your baby's care team!


Image via preemieprimer.com

baby development, baby first year, baby health, twins & more, multiples

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Lynette Lynette

my husbands co-worker had a preemie for his first.  And then the doctors didn't tell them that it upped their chances of another preemie by spreading the pregnancies too close together till after they were pregnant w/ the second(pregnancies were 12mo apart, but it would have been wiser to go at least 18mo apart).  Thankfully everything went really well w/ the 2nd and baby went to term.

LoriA... LoriAnn87

I had my son at 34 weeks because I had developed preeclampisa when I was 32 weeks. I had my son via c section because he was breech and also my preeclampisa was getting worst. My son was in the NICU for about a week before coming home. Everything listed about me and my husband knew because my ob was really great and the hosptail I had my son had a really great preemie dr's and told us everything we need to know about having a preemie. After having my son I asked my dr about my changes having another preemie and she told me your changes are high to have another preemie and preeclampisa but we will closey watch you. Friends of me and my husband had there first son at 32 weeks and 7 years after having him then had another preemie at 34 weeks because she knew the changes were having another when she got pregnant again but there are some women who don't.

Javi0... Javi05Eli07

Leaving my 29 weeker in the hospital was hard, but the guilty feeling of not being able to keep him inside was harder to handle.  The staff in the NICU were great, they answered all the questions we had and explained everything great.  When it became apparent I was not leaving the hospital pregnant, they sent a neonatologist to talk about what was going to happen and the risks.  We got very lucky and he came home after 5 weeks at 34 weeks.  After having three pregnancies end because of preeclampsia with one being a preemie, we have decided to not take chances with having more children.

Denise Donegan

Years ago (maybe 10 yrs ??), I paid for the domain name, Preemie.net . I had grand notions of using it as a support group to bring nurses, ancillary services, and parents together to discuss ideas. Also thought I could maybe sell preemie products; clothes, positioning aids, books at a discount. It didn’t come to fruition but maybe now is the time. We’ve got facebook and twitter to help get the word out now. —–Denise, NICU RN

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