Supporting Premature Babies & Their Families

Almost everyone knows a preemie. Whether you were born early, your own child was or a friend or neighbor’s baby came into the world before 38 weeks, there are many things we should all know in order to support these little ones and their families.

The feelings associated with having a baby prematurely or having a baby born with special needs, medical or otherwise can be summed up in the poem Welcome to Holland” by Emily Perl Kingsley. It is a very scary and anxiety laden journey and has been compared with a roller coaster ride by many parents.

Here are some facts about prematurity that may or may not be surprising to you:

  • Almost 13% of all babies born in the USA are born at less than 37 weeks gestation (which means 1 in every 8 births).
  • Due to medical advances, more than 90% of babies born weighing at least 2 pounds are surviving today, which is a dramatic rise in the last 20 years.
  • Babies born prematurely are at a greater risk for many medical/health complications.
  • Studies that have followed NICU babies into school-age have shown that learning problems, developmental delays and behavioral problems can occur.
  • Once discharged to home preemies are still more susceptible than their full term peers to infections like RSV, bronchiolitis, pneumonia, jaundice and dehydration which are the 5 leading causes of hospitalization for infants less than one year of age in the USA.
  • Premature babies have a lung volume half that of a full term baby.
  • Preemies airways are smaller & narrower than a full term baby.
  • Babies born at less than 36 weeks have not received the full transfer of maternal antibodies to protect them against RSV.

As soon as a baby is born early, a parent’s number one fear is usually “will my baby survive?”. Think of how heart wrenching that alone would be. Your baby is whisked from the delivery room to the NICU and some babies spend 3 or more months in the NICU before ever coming home. Some parents never got to hold or see their baby as soon as he/she was born. Talk about traumatic.

Now, when the time comes to finally see their newborn, the baby is SO tiny and SO fragile that parents may feel scared or helpless and unsure of how to hold, feed, change or bathe their preemie. Remember, a preemie may be hooked up to all kinds of tubes, wires and monitors, so simply picking the infant up is a whole new challenge. Diapering around those tubes and wires also presents a new set of challenges for a parent, especially a first time one!

Think of the bond you develop with your newborn while breast or bottle feeding them, the snuggling and nuzzling…now imagine a baby that is not yet able to breast or bottle feed and is fed by a tube.

The emotional & physical strain of having a preemie can be overwhelming. Being a new Mom or Dad is challenging enough, but being a parent of a preemie leads to even more intense stress. Parents face sleepless nights, loss of work, loss of income, lack of time with their other children, etc. These are all very real concerns that health professionals, early intervention professionals and family members must recognize and help support. Don’t be surprised if a preemie parent feels depressed, helpless, hopeless or even angry.

Be aware that preemies, even if “doing well” may have health complications related to their hearts (PDA, septal defects, heart valve issues, tetrology of fallot, transposition of the great arteries), breathing (apnea, RDS, BPD, pulmonary hypertension), eyes (ROP or strabismus), ears (hearing loss, sound sensitivity) and other organs. They are at higher risk for infections including meningitis and sepsis, as well as those already mentioned above. Many preemies also have issues with feeding, sucking, low blood sugar or necrotizing enterocolitis because their underdeveloped intestines can’t cope with digestion.

Now imagine the day has finally arrived for your preemie to be discharged and come home. What a happy day right? Well, this too, can be a day of mixed emotions, as many babies are being discharged while still on a monitor, having a feeding tube or using oxygen. And now, after months of nurses and doctors being available 24/7, all this scary responsibility falls on YOU! As babies are discharged they are trained by medical professionals on home-care needed for their baby, but once again, getting home and doing it alone is a whole other ballgame.

After a baby arrives homes it is important that families:

  • Have a clean house so their baby is protected from dirt, dust, smoke, pet dander & germs
  • Follow up with all appointments for check ups and immunizations
  • Use proper & vigilant hand washing and sanitize toys
  • Do not allow visitors who are sick to visit and minimize the number of people who handle the baby
  • Keep track of how much & how often the baby eats per day and how many wet diapers
  • Keep your baby home as much as possible & avoid unnecessary outings to public places

Can you see why those tips alone can be a challenge for many of our families?

Lastly, remember, we can ALL support premature babies and their families! Early Intervention is just one resource that a family can rely on for guidance and support during the challenging first 3 years. The March of Dimes has an online community where families can connect with other families, Preemie Parenting  is a website with a listing of support groups, Preemie Care lists resources by state and offers parent education and Preemie Advocacy is a website with articles that encourage parents to be advocates for their children.

In December 2006 the “Preemie Act” was signed into law. It is a bill that expands research on prematurity and improves education for expectant mothers and advocates for better treatment for all premature infants.

Resources:
Babies from the NICU-Preemie Conference 2011
Helping Parents Navigate the Premature Journey by MedImmune Advocacy 2009
– National Center for Health Statistics, Centers for Disease Control & Prevention, US Department of Health & Human Services
– National Hospital Discharge Survey 1997-2000

Read our articles about Supporting Premature Babies:
Diagnosis: Premature Newborn
Common Health Problems That Affect Premature Babies