My daughter was born October 10, 2011, six weeks premature, and spent approximately the first month of her life in neonatal intensive care. What follows is not meant to diminish the excellent treatment she and my family received from many amazing healthcare professionals. There were more than a few people who went above and beyond. Like any institution, there were also more than a few people who failed us. But this is not meant to be a personal attack against them.
Rather, what disappointed us was bigger than any individual. And you deserve to know why the hospital did not meet our expectations. As a consumer, especially in the "baby industry," we have a choice and we have rights as a patient/customer to get care and service equal to the best around the region and the nation.
This is also not meant to be simply a laundry list of needed facility upgrades--I believe your Labor and Delivery unit is scheduled for a renovation? And I'd hope you know your NICU is outdated in both equipment, decoration, and practices. Or perhaps not. Regardless, there is an ongoing conversation culturally about what healthcare should look like. And I'm hoping to help shine a light on families expect from neonatal care in a situation like ours.
Consider this a warning that we would have taken our business elsewhere had we known what the road ahead looked like.
Labor and Delivery--
NICU--
Rather, what disappointed us was bigger than any individual. And you deserve to know why the hospital did not meet our expectations. As a consumer, especially in the "baby industry," we have a choice and we have rights as a patient/customer to get care and service equal to the best around the region and the nation.
This is also not meant to be simply a laundry list of needed facility upgrades--I believe your Labor and Delivery unit is scheduled for a renovation? And I'd hope you know your NICU is outdated in both equipment, decoration, and practices. Or perhaps not. Regardless, there is an ongoing conversation culturally about what healthcare should look like. And I'm hoping to help shine a light on families expect from neonatal care in a situation like ours.
Consider this a warning that we would have taken our business elsewhere had we known what the road ahead looked like.
Labor and Delivery--
- There were far too many people in the room during the delivery. We realize Loyola is a teaching hospital, but at the very least everyone should say hello, what they are doing there and why, or ask if their presence is approved.
- As a general rule hospital-wide, your staff needs to introduce themselves when they enter a room including what their title and job is. Other hospitals in the area do this and it is quite helpful. Especially since a stay can involve seeing a never-ending stream of medical workers who all blend together after awhile.
- This is a happy-yet-stressful time in the life of new parents. Coming and going should involve less signing in and repeat visitors should be recognized. As with the NICU (below), perhaps an electronic clock-in system or security band that activates the doors.
- There should be refrigerators in all the delivery rooms and all the mom/baby rooms. Other hospitals offer this and it helps to have snacks handy.
- A room should be set up with coffee, juice, and snacks for patients and their families. At other facilities, nurses inform the patients what dietary restrictions they have and then dads can bring mom ice chips, juice, water, etc. at-will.
- A team of lactation consultants needs to be available daily to help mothers. Other hospitals rent breastpumps, have 3 or more LCs on staff, and offer follow-up care at home.
NICU--
- Parents should receive, at bedside (or online), a daily summary of their baby's day for easy reference.
- Bed areas should have curtains for privacy during family visits and perhaps a more homelike feel with rocker, chairs, table, etc..
- For longer stays, mom and dad should have easier access to the NICU with less badging & sign-in steps. Perhaps an electronic system or swipe card?
- My understanding is that nurses can request babies--I would suggest that parents be able to discreetly ask to work with nurses they feel are a better fit for them and their baby.
- Consistency of care is a major issue. The level of communication, care, and opinion of how a baby is doing seems to depend on who saw them. If someone tells you one thing, someone else shouldn't tell you the opposite a few minutes later. Policies and procedures should be uniform.
- Parents should have an easier time getting information and knowing their baby's schedule and the NICU schedule. Perhaps an online login for e-mailing doctors would be helpful. A point of contact for discussion of treatment should also be created. Being able to discuss your baby with one person helps avoid playing catch-up every shift/day. It also makes it easier for parents to easily make changes or suggestions or ask questions about their baby's care. Far too often we were left waiting while someone went to find a doctor who then had to find time to come talk to us. That time for talking with the doctor should be built into the day.
- Parents should be given reasonable veto and say in decisions made about their baby. Non-critical or non life-threatening medical treatments should be offered as a choice to be made under advice from doctors. Too often, NICU staff acted and then told the parents what was done.
- For stays of longer than a week, families should be given a parking pass that is discounted/free. (We have since learned that this should have been discussed with the social worker mentioned below.)
- The hospital environment should attempt to include the whole family to make up for the valuable bonding/welcoming time that is lost. There should be more emphasis on quiet time alone with the new baby and more emphasis on breastfeeding when possible, skin-to-skin contact, or overnight stays with the baby, etc..
- Better access to services is needed and should be offered throughout a NICU stay. Parents may need a chaplain, contact with nonprofits, childcare for older siblings, counseling, or even someone to bring them food when they are spending so much time at the hospital.
- Loyola needs to have a patient advocate assigned to each family with a way to reach them clearly posted.
- There should be a transitional nursery for babies who are well enough for less than intensive care.
- Better home healthcare options should be available so babies who are doing better can be sent home earlier and cared for under the guidance of in-home nurses.
- Alternative options and treatments should always be explored and offered along with presentations to the parents about the current research. Doctors should explain why they are taking a given medical route and recognize that parents may wish to participate.
- Lastly, the new lobby is impressive--some of that atmosphere needs to move to L&D/NICU. Other NICUs have private rooms, fish tanks for a calm atmosphere, play areas for siblings, carpet, more windows. This is obviously a fundraising issue. But interior design needs attention.
- Some of these are obviously longterm issues, but many could be fixed with short-term, temporary solutions until better arrangements can be made.
The bottom line is that other hospitals in Chicago and around the country are providing maternity and neonatal services that--regardless of Loyola's medical outcome rates--are more appealing to a 21st century healthcare consumer. The most unpleasant part of having a sick child should be having a sick child. At nearly every step, we felt like a bad situation turned into an ordeal largely because of the facility we decided to use. Rather than a warm, inviting place trying to make us as comfortable and (as per your mission statement) spiritually better, we more regularly felt neglected, ignored, and like we had little say in what was happening to our child.