Preemie Problems

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By Katherine Bontrager

Jennifer Massaro of Los Gatos, Calif., wishes she’d joined an online parenting group. Jane Rubinstein of Farmingdale, N.Y., wishes someone had told her it’s important to look back and acknowledge progress.

Both moms wish they’d been more prepared for what caught them so off guard: the birth of their children far before their due date. Massaro’s son was born at 35 weeks. Rubinstein’s daughter was born at 26 weeks and 5 days, weighing only 990 grams.

If parents face the possibility of premature birth, they should inform themselves about the challenges their child or children might face.

“I was a high-risk pregnancy, and when you know you’re in that situation there are a lot of things you can do beforehand,” says Massaro. “For starters, parents need to take a tour of the NICU [neonatal intensive care unit], if possible, and get a handle on its procedure and what it will take to get an infant discharged. Then, take control of your own situation. Learn how the charting is done and what milestones your baby needs to meet before being discharged.”

This routine is something Rubinstein knows all too much about. Her daughter’s outlook upon her very early birth was dire: bilateral grade III intraventricular hemorrhages, enlarged heart, cerebral palsy and respiratory distress syndrome that became obstructive lung disease. “It’s two steps forward, one step back, so always remind yourself to look back at the trend to see the forward movement – whether it’s a neonate in the ICU relying less on a respirator or a baby moving from sitting to crawling to walking,” says Rubinstein. “It’s so much easier to see the progress in hindsight.”

Preemie Challenges

It’s quality advice such as this that Dr. F. Sessions Cole, the director of the Division of Newborn Medicine at St. Louis Children’s Hospital, thinks parents need to hear – especially because a growing number may face this difficulty. “If parents face the possibility of premature birth, they should inform themselves about the challenges their child or children might face,” Dr. Cole says.

These challenges vary based on the time in pregnancy during which the baby is delivered. “A baby who’s delivered 16 weeks before the due date will inevitably face major challenges, while the baby delivered four weeks early may be completely normal,” Dr. Cole says. “Because the lung is the last organ to mature, many premature infants encounter breathing problems, called respiratory distress syndrome, due to increased stiffness of their lungs. These problems may require administration of a substance [called surfactant] to reduce the stiffness, or preemies may require oxygen or use of a ventilator to help them breathe.”

A second problem is nutritional. Preemies may not yet be able to suck, swallow and breathe and, therefore, can’t take in breast milk, so intravenous feeding may be needed, says Dr. Cole. Other issues include an increased risk of bleeding in the brain and infection, which is why many infants are treated with antibiotics right after birth.

Joan Smith, a neonatal nurse practitioner at St. Louis Children’s Hospital, knows all too well the risks associated with premature births. “I’m not sure parents can adequately prepare themselves for this highly emotional experience,” she says. “As a neonatal nurse and a parent of premature twins, I can’t say that I – with years of NICU experience – was adequately prepared for this emotional rollercoaster. Parents who experience a premature birth are faced with feelings of terror, joy, panic, excitement, anger, guilt, fear, sadness and grief, just to name a few. They’ve been robbed of the experience of having a full-term, ‘normal’ delivery.”

Smith thinks if someone is going to “prepare” to have a premature birth, they need to know that these emotions are normal and that having a support system in place is critical. “This parental support may include each other, family, friends, healthcare providers, parents who have previously experienced the birth of a premature infant and/or clergy,” she says.

“Having a premature baby puts new parents on a medical and emotional rollercoaster,” says Dr. Cole. “Trust in your baby and trust in your baby’s doctors and nurses. While prematurity can be challenging for parents, the outcomes for premature babies are overwhelmingly favorable thanks to parental love and commitment and medical/nursing expertise and technology.”

Reaching Out

Dr. Cole says there are countless resources available for parents: pediatricians, family practitioners, neonatal nurses and neonatologists. In addition, the March of Dimes and the American Academy of Pediatrics both offer excellent Internet sites with reliable information. And while you’re in the hospital, loads of help will be offered in the ICU.

Massaro says there’s a tendency to let everyone else do everything for your baby. “Don’t let that happen,” she says. “Especially in a busy NICU, there are lots of nurses on rotation and no one single nurse will get to know your baby as well as you will over the course of the [potential] weeks that your baby is in the hospital.”

Smith agrees it’s vitally important for parents to “parent” their baby in the NICU. “Because the baby may be extremely small, sick and connected to a lot wires and tubes, it’s easy to assume the role of a bystander or visitor and leave the care of the baby to the nurses and physicians,” she says. “But a parent’s tender touch, gentle voice and participation in the baby’s care are essential – both for them and the infant.”

As part of this hands-on approach, Massaro says to speak up if you sense something is wrong. “Don’t feel afraid to ask questions and get involved,” she says.

It’s advice that Rubinstein agrees with wholeheartedly. “You’re the parent,” she says. “You’re your child’s best and most appropriate advocate, so don’t ever let a medical or educational professional talk down to you, dismiss you or brush over you. Push for all the services you can get: in the hospital, in early intervention at home, in preschool and school-aged education services. Articulate loud and clear what your child needs and deserves. Don’t let them mollify you with ‘This should be good enough.’ It’s up to you to demand as much as you can.” She says to ask for information – as much as you need – and tell them if you need more or less than what they’re offering you. “You know what you can handle,” she adds.

And part of that process is learning to share the load with family and friends. “Share information, hopes and dreams with your families,” says Rubinstein. “But don’t let them exhaust you.”

Relaying Information

Rubinstein found that an effective way of sharing news without spending hours on the phone explaining details was to empower her family with information. She found a book about premature babies that proved helpful for herself and her family. “I purchased one copy for me and one for my mom,” she says. “As doctors would give me new diagnoses or order new tests, I’d find them in the handbook, call my mom and refer her to the text in the book. Then after I’d had the opportunity to assimilate the information, I’d be able to call her back and talk about it, and she had the background from the book.”

Massaro acknowledges how daunting it can be to digest all the information thrown at new parents of preemies. “It’s like learning a new language and the earlier you start to learn, the better,” she says.

But despite the deluge of information, possibilities and fears, one piece of advice remains most important: Celebrate your child. “Celebrate their birth, each milestone in the hospital or at home,” says Rubinstein. “Despite medical or developmental struggles, that preemie is your child. Sometimes parents and families are so caught up in the trauma and emergencies that they forget: A baby’s been born – your baby. Congratulations! And if people can’t celebrate with you, find a support group to share in the victories as well as the worries. Surround yourself with positive energy so you can be strong for your child.”

And these moms have much to celebrate. Massaro’s son is now a healthy, happy 2-year-old. And Rubinstein’s daughter has far exceeded the initial beliefs that she wouldn’t ever sit, stand, walk or talk.

And that’s something to celebrate.

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