Maddie Spohr's Family Creates NICU Packs: And You Can Help

Jeanne Sager
3

Maddie SpohrWhen Maddie Spohr passed away at 17 months old, the blogging world erupted with sympathy and clamors to help the amazing family behind popular blog The Spohrs Are Multiplying.

Now you can do something for them -- and along with it, you can help thousands of moms who are lying in hospitals with high-risk pregnancies around the country.

The Friends of Maddie are making NICU packs to be sent to neo-natal intensive care units around the U.S., using the Spohrs' know-how on what moms need when they're waiting to deliver a high-risk preemie and in the days after giving birth.

The Stir talked to Maddie's mom, Heather Spohr, about their new project and what you should take when you're packing for the NICU.

Can you share a little background on Maddie for folks who aren't familiar with her story?

Maddie had an extremely difficult pregnancy complicated by uterine blood clots and my water breaking at 19 weeks. After an extended period of bed-rest both at home and in the hospital, Maddie was born at 28 weeks and 6 days gestation.

The early going was touch and go as Maddie's lungs were very underdeveloped, but she soon grew stronger and endeared herself to nurses and doctors alike in the NICU. Mike and I were by her side constantly while she was in the hospital, and, after 68 long days, she was finally released.

In our home Madeline grew and thrived, and she was happiest child I have ever met. She had a smile for everyone, but saved her biggest smiles for her family. Her personality was enormous and her laugh was contagious. Tragically, when Maddie was 17 months old, she came down with a cold and we took her to the hospital.

In the next 24 hours everything that could go wrong did, and our sweet Madeline passed away.
 
Beyond the fact of having a child IN the NICU, what are some of the hardest things for a family who's spending their days there?

When your child is taken to the NICU, you are immediately thrown into an environment that is totally alien to you.

You want to be there for your child as best as you can, but you don't know how to do so in this new environment nor do you have the tools. This is very scary, and makes an already incredibly stressful situation even more so. Also, for many families the only NICU capable of caring for a seriously ill baby is located far from their home. This creates a set of additional problems such as the need to find local lodging, to take leave of work, and to cope without the support systems of family and friends.


What made a difference for you guys? Is there anything you'd suggest we do if a friend's child is in the NICU?

The support that Mike and I received from our family and friends definitely made a difference. While every family is different and has different needs, a friend can help by offering to pitch in at home (walking dogs, watching older children), bringing food, and letting other friends and family know of the baby’s status as it can be emotionally draining for a parent to have to give constant updates.

One more thing: Say “Congratulations!” The birth of a child should be celebrated regardless of the circumstances, and a parent appreciates it when others understand that.

How did you come up with the family support packs?

The idea for the family support packs came out of our own experience in the NICU with Madeline. In the minutes, hours, and days after arriving in the NICU, we found ourselves scrambling for simple items such as pens, pads, and a file to hold for paperwork.

Additionally, the nurses reminded us that if we were to be there for our baby, we would need to take care of ourselves too by staying hydrated and nourished. It occurred to us that if all of these items could be supplied to a family upon their arrival, it would make what's likely the most difficult time of their lives just a little bit easier. 

What's in them?

The packs consist of:
  • A large reusable bag
  • A Tri-folio with a pad of paper for note taking, and an accordion file to help keep track of paperwork
  • A reusable water bottle
  • A disposable camera
  • Antibacterial lotion
  • Chapstick
  • Tissues
  • Pens
  • Mints
  • A travel toothbrush with toothpaste
  • Snack bars
Who are the Friends of Maddie?
 
A friend of Maddie is anyone who cares about critically ill babies in the NICU and their families.

How can people help with the project?

People can help by making monetary donations at the Friends of Maddie website, or by donating their time to help with the organization’s operations.

How do we get them to a hospital near us?
 
The biggest thing someone can do is to supply Friends of Maddie with contact information for the NICU director or the charge nurse of his or her local hospital. If he or she is able to speak to these NICU officials in person about our organization’s mission and how it could benefit their hospital, that would be tremendously helpful as well.

Do you anticipate a NICU stay?

 

Image from Heather Spohr

Read More