Kristie McNealy, MD

While we were in the NICU with our daughter, who was born at 31 weeks in December of 2005, I was anxious to find some sort of support from other NICU parents.  Unfortunately, the culture in our NICU was dominated by a concern for HIPAA and patient privacy.  Parents were banned from the NICU during nursing change of shift and were not encouraged to participate in rounds, lest the accidentally hear something about the baby in the next isolette.  Parents were not encouraged to interact, and there was no formal support program.  During 7 weeks in the NICU, despite conflicts with staff over poor communication and other ongoing problems, we were never once put in contact with a social worker or any parent support staff, and to this day, I don’t know if these services are even available.  The one mention of parent support was an advertisement from a local therapist who charged a fee for counseling and group support meetings.

After leaving the NICU, I felt the need to connect with other parents who had been through the NICU experience, so I started a preemie meetup group on MeetUp.com.  The group ended up with about 7 or 8 member families, but after 6 months, I never managed to get more than one other family to actually show up to an informal get together.

It seems like every parent of a preemie I meet expresses feelings of isolation, and worries they are alone in the feelings of sadness and loss they carry from their baby’s early arrival.  Yet, despite my efforts to bring these parents together with other families with preemies, nothing ever seems to come of it.

So, what I’m wondering is this: are parent support services both during and after the NICU already adequate or perhaps unnecessary to most people?  Am I alone in feeling a desire to connect with other parents who’ve been there?  Is there a reason that parents seem to express a need for support and understanding, yet, in my experience, they tend to shy away from ever actually getting together?  I have a couple of ideas relating to this last question, but I’d love to hear what you think before I write more . . .

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