Monday, April 13, 2009

For Maddie and the Spohrs

For the past week, I have been seeing and participating in the flurry of tweets surrounding the loss of Madeline Spohr. I have been heartened to see what twitter is capable of, as thousands rally behind the family. This is my contribution.

I held her, the tiny thing, she was 3 lbs. 14 oz. Born premature, 31.4 weeks. I was fortunate, she was born on the cusp of 32 weeks, the time when doctors agree many of the problems with prematurity are minimized. I held my tiny newborn, and sobbed.

She was in the hospital for 30 days, during which time I lived at the Ronald McDonald House. Though I was only twenty minutes away from home, I needed to be close to her. My husband brought the kids to the RM House and that was how we lived for a month.

When I brought JBug home, she was still so small. She wasn't even five pounds yet. And I was scared. The thing I was most afraid of, after dire warnings from the neonatologist? RSV. Respiratory Syncyhtial Virus is extremely contagious, and most babies get it before they turn two. In adults, it isn't anything to be concerned about, it causes a cold. In infants, especially infants with a compromised immune system, it can be deadly. I took it to heart.

For the entire season, (we brought her home in September) I didn't go anywhere with my daughter. I stayed home until May, when the RSV season was deemed over. JBug also got monthly RSV vaccines, immunoglobin her body needed to try and stay strong and fight off the disease. Synagis is expensive, but it is covered by most insurances if your baby is at risk.

Risk factors include:

  • prematurity
  • lung problems
  • heart problems
  • low birth weight
  • daycare
  • family history of asthma
  • older siblings
  • smoking around baby

I remember the fear I felt, every time one of my children coughed. We used hand sanitizer by the truckload. But JBug didn't get RSV, and we breathed a sigh of relief. The next year, I called about getting the shot again, and all doors were closed. She was too old at that point, no longer a risk. And we were again lucky.

I know the fear I felt during those months. But it is nothing compared to Heather's fear. And she wasn't so lucky. Her sweet Maddie died last week. Mama did everything right. Maddie was past the "age of danger."

And yet, we are still attending a memorial service tomorrow.

Life isn't fair. My chest still tightens at the thought of those days, and the fear that took over my life. My heart goes out to Heather and Mike Spohr. And I hope yours does, too. They could use some help with expenses. A Paypal account has been set up for them. Please donate whatever you can.

Thanks tons. Let's put social media to work for good.


1 sent chocolate:

Alicia D. said...

I too heard about the Spohrs and little Maddie growing angel wings far too soon in her young little life. Devestating. I cant even BEGIN to imagine this kind of pain. My fourth daughter also had RSV only a few days after she was born. We had her home for 4 days and then took her back to the hospital where she stayed for a week. She is 16 months and totally fine now (she wasn't a preemie... born at 7 lobs 2 oz) and it was just random that she contracted RSV (likely bc her 3 sisters were extremely sick right when she was born). We were so lucky... we ARE so lucky. Not a day goes by where I feel immense gratitude that my children are all okay. My heart is filled w/ sorry for all those parents out there who are not as lucky. It's totally unfair...

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