Tuesday, February 24, 2015

The preemie grows up

One of my favorite blogs, going way back to 2007, was "The Preemie Experiment," written by Stacy Carney Harbst.  How could you not be engaged by this story?

The day my water breaks, with my first pregnancy, I was 23.0 weeks pregnant. The experiment begins as soon as I am admitted. I was told that I would go into labor within 24 hours. When that didn't happen a neonatologist came into my room to tell my husband and I that our daughter will never be normal if she is born before 26 weeks and that she would most definitely have disabilities. He told us that we should just hold her and let her die in our arms. He was even willing to make sure our wishes would be carried out in the delivery room.

When we refused to give up, I was moved to another hospital with a NICU that was able to care for micropreemies.  

The experiment received their next participant the day our daughter was born-at 25.5 weeks, weighing in at 1 pound 12 ounces and 13 inches long. Post natal steroids for her-not being sure on the dosage-they just guess (based on past participants). So many tests for her lead to many blood transfusions. X-rays, ultrasounds, exams... all part of the experiment. Central lines, TPN, IV's-all without any pain meds. Is this humane? Alarms blare, phones ring, people talk loudly around the babies. All part of the experiment.

That was 8 years ago. She walks, she talks, she is advanced in some areas of school. She is beautiful. Hardly an outward sign of her prematurity.

A success?

Not if you ask her. She is in physical pain daily thanks to mild cerebral palsy. Headaches. Seizures. Major sensory issues. Can't write long due to fatigue and pain in her hands. Severe OCD. Pain in her eyes from the scar tissue. Has thoughts of killing her parents and her brother, and even herself. Tics. Chronic constipation. Yellow adult teeth. Reflux that has put holes in her teeth. Years of physical therapy. More tests. Lots of blood tests. Etc... blah, blah, blah.

Our heart aches for our daughter. I don't know what life would be like without her. I just can't bear to think what life will be like *for* her.

Stacy's last blog entry was in November 2011, when Paige turned 13:

I did it! We celebrated Paige's 13th birthday and I didn't cry the entire day!

Well, this note arrived a couple of weeks ago:

Dear Mr. Levy,

We are high school students in a Health Informatics class doing a project on medical errors in healthcare. Considering your background, we have decided to email you to ask if you are available to Skype. Our names are Paige and Alex, and we know about your background through Stacy (Paige’s mom) blog and have decided to contact you to ask you about medical error situations and what your take is on how to fix them. Thank you for your time. 

Paige and Alex

So welcome to Paige at age 16! It was supposed to be a Skype call; but their teacher Karen Smith (a very accomplished nurse, by the way) is, in her words, "a rookie," and inadvertently locked herself out of the Skype account for 24 hours (!). So we used an old-fashioned telephone line, as seen here, from Shelby County Area Technology Center in Kentucky. (Alex, unfortunately was ill.)

The girls have started a blog about patient safety issues.  Check it out here.

We had a great talk, and I hope they find it to be useful material for their blog and beyond.  In the meantime, I am happy to report that "the preemie experiment" was a huge success.

No comments: