BCH Thriving Blog-Our story

In April 2012, I had the honor of attending TEDMED. While it was very impressive, I left feeling like they missed an opportunity to have more patients on to share their experiences.  With so many medical students in the audience and around the world, I expect more patient engagement stories to be showcased.

On the flight home, I quietly pondered “What would my  TEDMED talk be?”  What is it that I would want medical students to hear from me, as a parent?

Please know, I don’t have any illusions that they would ever ask me to give one, but I was inspired to draft it on the airplane (right then). I didn’t really have the confidence to share it with anyone until August.  That’s when it moved quickly, I shared with Dr Claire and Boston Children’s Hospital featured it on their blog.

Here it is in it’s entirety.  Please feel free to share via this quick link (http://bit.ly/14XGCpV)

A is for Alexis

In college I had three majors, and eventually went on to earn a PhD and MBA. But my biggest life lessons came from my MOM degree. When I was pregnant I found out I was having twins. Baby A and Baby B were growing fine until week 29, when suddenly I didn’t feel well and went to the hospital. At that point, the doctors told me that they couldn’t find Baby B’s heartbeat.

I was rushed to Boston for further testing, where it was determined that Baby A was alive, but Baby B had died.

Two months later Baby A, now named Alexis, was born. She weighed just 4 lbs. We were given a few moments to meet her before she was whisked away to the neonatal intensive care unit (NICU) for monitoring. We then had a chance to say goodbye to Baby B, who we named Kaitlyn. The hospital provided us with lovely print of Kaitlyn’s footprints that we still cherish today.

We were given time to process our grief, but soon a doctor visited our room with devastating news. “Alexis is going to die within her first month of life,” she said. “You should call your family and friends to meet her; she doesn’t have long.”  Then she left.

It was a surreal experience to say the least, but two and a half months later Alexis was still in the NICU. She had a long list of medical problems, but the list was overshadowed by her will to live. She was too sick to do much, but she clearly recognized my touch and responded to her dad’s calming songs. Over time her condition improved and we eventually graduated to home care.

Alexis in the ball pit

As Alexis grew I became increasingly amazed by how far she had come. But despite all she had accomplished so many people continued to define her by her “wrongness”.  After all, at just 1 year old, she was dealing with:

1. Developmental delay

2. Plagiocephaly (a flattened appearance in the head or face)

4. Choanal atresia (a blockage of the nasal airway)

5.  Microphthalmia (an eye abnormality where the eyeball is undersized)

7. Congenital dacryostenosis (severely blocked tear duct)

8. Cleft palate (malformation of the roof of her mouth)

9. Risk of Aspiration (swallowing difficulties from cleft palate and blocked nostril)

10. Clasped hand deformity/camptodactyly (abnormally curved hand)

11. Upper limb hemihyperplasia (unequal growing of the limbs)

12. Peripheral pulmonary stenosis (a narrowing of the arteries)

13. Bilateral Stenotic ear canals (A narrowing of the ear canal)

14. Cervical vertebral body anomalies (fusions in her cervical spine)

15. Hydronephrosis (a backup of urine that causes the kidney to swell)

But no matter how daunting this list looks, her father and I see a different list when we look at our daughter:

1. Joy

2. Love of life

3. Happiness in her world

4. Exciting and social

5. Belly busting laughter

Life with a chronically ill child is not easy. Right now Alexis’ medical records are taller than she is, and the list is growing. But on the bright side, Alexis is growing too. In fact, that was my biggest problem with Alexis’s medical care for so long. I wish more doctors acknowledged the bright side.

As a parent of a sick child, I’m asking medical professionals to think about how their actions impact those they treat, outside of tests and prescriptions. To do that, here are a few things to things to keep in mind:

  1. Always acknowledge, appreciate and respect the family.
  2. Please understand why we are so anxious to know a diagnosis. We appreciate your desire to be thorough and “solve” our child’s problem, but that solution is often just the beginning for us. We’re anxious to know how our lives will change and to find ways to balance that change with parenting techniques that will make our children’s lives better.
  3. We need to be partners in the care of our kids. You see them for a few hours every year; we keep them alive for the other 8,755 hours.
  4. We know that part of being a team means getting bad news. However, you have the power to layer those conversations with as much hope and understanding as possible. Please do your best to exercise that power.

Photo by Alyssa Proia Photography

I know this list can be followed because I’ve experienced it firsthand. After years of treatment and following Alexis through one challenging diagnosis after another, one of Alexis’s doctors recently watched her walk out of her sixth annual checkup, hand-in-hand with her dad. The pediatrician was so moved by all Alexis has overcome she started to cry. She told me later that the tears started flowing because she was so proud of Alexis, so proud of us as parents and proud of herself and her staff for helping everyone get this far.

That afternoon we all saw Alexis not as a collection of wrongness, but as a bundle of hope. We knew that six years after her birth, “A” didn’t just stand for Alexis, it stood for Awesome.

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Posted on 02/08, in Stories of Hope and tagged , , , . Bookmark the permalink. Leave a comment.

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