Hand to Hold's Official Blog: Written by Parents for Parents

Why NICU Families Need a Bill of Rights

Kelli in the NICUIt’s October. Stores around town are decorated with spiders, and spooky pumpkins are beginning to light up front porches in my neighborhood. My kids are excited about their new costumes and soon cute little ghosts and goblins will knock on our doors. I remember well my little pumpkin’s first Halloween which was spent in the Neonatal Intensive Care Unit. I can truly say it was the most frightening Halloween of my entire life as I worried about my son’s prognosis and how I would be able to meet the needs of my medically fragile baby once he came home.

That’s why it is so important to me to advocate for preemie and NICU families to reduce the fears new parents face and encourage dialogue with the medical professionals who play such an important role in helping NICU families during and after their child’s hospital stay.  To this effect, Hand to Hold participated in the development of the NICU Parent’s Bill of Rights, a list of ten essential rights that all NICU parents should expect during their child’s NICU stay, that was recently unveiled by the Preemie Parent Alliance at the 2013 National Association of Neonatal Nurse’s conference.

NICU Parent’s Bill of Rights

  1. My parents are my voice and my best advocates; therefore, hospital policies, including visiting hours and rounding, should be as inclusive as possible.
  2. In order to be prepared to meet my needs when I am discharged, my parents need to understand my medical diagnosis. Be patient and teach them well.
  3. Bonding is crucial for my development. Allow and encourage my parents to hold me as often as possible.
  4. Help prepare my parents to be my primary caregivers when I go home. Encourage them to participate in as much of my daily care as possible.
  5. Feeding helps my parents feel “normal.” Please allow them to feed me by bottle or breast, whichever is working best for me and my parents. Help reassure my mom it’s okay if she doesn’t produce milk.
  6. If I, or one of my siblings, pass away while in the NICU, remember to continue to refer to us as multiples (twin/triplet/quads, etc.). It is important to my parents that you continue to honor and acknowledge each of our lives.
  7. Athough I may be a late-term preemie, the NICU can still be a very traumatic place for my parents. Ensure they receive just as much TLC, information, education and as many resources as the parents of my micro-preemie friend.
  8. Encourage my parents to attend care conferences and schedule them regularly. They are a vital component of Family-centered care and they help educate my parents about my progress and long-term prognosis.
  9. My parents have the right to know all about me. Let them have open access to my medical records and encourage their questions.
  10. My parents are experiencing a range of challenging emotions. Please be patient, listen to them, and lend your support. Share information about resources such as peer-to-peer support programs, support groups and counseling, which will help reduce PTSD, PPD, anxiety and depression.

The Preemie Parent Alliance, an organization representing preemie support organizations, developed this document to help address and break down barriers that often prevent NICU parents from bonding with their baby and playing an active role in their daily care. In order to care for a medically fragile infant after the NICU, parents must feel empowered, competent and capable of being their baby’s advocate and caregiver. Therefore, they must be encouraged and supported throughout their baby’s NICU journey.

It is our hope that the NICU Parent’s Bill of Rights will help bring awareness to the best practices of Family-Centered Care so families are better prepared for life after NICU. We encourage yout to print and share a copy of the NICU Parent’s Bill of Rights with your NICU.

Peer Support

In addition, Hand to Hold’s national peer-to-peer support program addresses the fears and questions new NICU parents have by matching them with seasoned NICU parents who share a similar birth experience. Parents who participate tell us that the support they received from their Helping Hand mentor helped them better cope with their situation and feel more capable of caring for their child.  If you are in the NICU now and would like a match, we would be honored to support you through your journey.

If it’s been a few years since your child was hospitalized and you would like to give back to help a fellow NICU family, we encourage you to consider becoming a Helping Hand Mentor to pass on what you know to a fellow parent so they, too, can connect with someone who understands what they are going through.

And while we can’t change the outcome of what is hands-down one of the most scary times in our lives, we can ensure that no one has to go through it feeling lost, confused and alone at Halloween or any other time of the year.

Kelli Kelley About Kelli Kelley

Founder, Hand to Hold - Kelli D. Kelley (TX) is the mother of two preemies – Jackson born at 24 weeks in 2000 and Lauren born at 34 weeks in 2003. She is the founder of Hand to Hold, a 501(c)(3) nonprofit dedicated providing support and navigation resources to families who had a preemie, who had a child in the NICU or with a special healthcare need, or who experienced loss. She has experienced the emotional fallout and isolation that having preemies often causes. As a direct result, Kelli has dedicated her life to offering hope and sanctuary to all parents who have had similar journeys. Contact her via email.

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