Madeline's Story

Madeline Ann Long was born on February 19, 2009. My husband, Jack and I would welcome our baby girl that day. We knew nothing of the journey that was ahead of us, but only felt the excitement of meeting our 1st child.
At the time of Madeline's birth, Jack was on active duty as a part of the US Navy. After many long months of  us thinking about the "what ifs" of possible conceiving a child and giving birth while Jack may be deployed...We settled on the idea that now was the right time for US. We would make the best of Jack's deployment. I would take care of my "healthy" baby girl while her daddy fought overseas.

It didn't quite work out this way though...

I was induced on February 18th and Jack was set to deploy for 6 months with the USA Navy. Everything about the birth was "normal" He was able to meet his little girl on February 19, 2009 for a few hours before he left his new family that day.

Meeting my little girl

Madeline was born with fluid in her lungs but much of the hospital staff and doctors believed she had inhaled too much amniotic fluid. She was put on IV antibiotics for 48 hours and given a ng tube to fed through. The doctors wanted to keep all fluid out of her lungs and felt as though the ng tube was a "safer" method than bottle feeding. Madeline was required to stay in the Intensive Care part of the nursery just to be safe.

Madeline Long - 24 hours old

Within 24 hours, Madeline's stomach became distended. She had not stooled at all since she was born.
The doctors soon realized that Madeline's condition was a lot worse than they had originally thought.

Madeline was rushed by ambulance to a nearby children's hospital  that had a bigger PICU. She was poked and prodded, x-rayed and examined at only a 24 hours old. It was then discovered that Madeline had an intestinal blockage known as Merconium Illius.  All efforts had failed to move the blocked stool out of her intestine so at only 24 hours old she was rushed into emergency surgery to remove the blockage.

PICU- 4 weeks after surgery

 Jack did not know his daughter was in emergency surgery.
He was miles under the ocean and countries away.

The surgeon spoke with me after Madeline came out of surgery. He mentioned to me that most children (90%)that have this kind of blockage have a disease called Cystic Fibrosis. He asked if I had ever heard of it and mentioned that he didn't know a lot about it. He noted that it was genetic and asked if I knew of anyone who had it in our families. I was SURE he was wrong...

After months and months of stomach pumpings and invasive procedures Madeline finally start pooping about 5 weeks after the surgery. We  were told that she would have a blood test done to see if she did in fact have the disease. Three 3 weeks after she was born, we were told as we sat by her bedside that she did have CF.

But the hospital stay didn't end there....

The pulmonologist had asked that she wanted to get a baseline of her lungs once she was diagnosed.
The x-rays showed mucus pockets and they made the lungs appear very unhealthy. We were given Tobi to take with us at home and told to bring her back to the hospital in a week to see if her lungs had improved.

Inhaled TOBI
Can you see how THIN she was?
Labeled "failure to thrive"

Madeline was now 2 months and had NEVER been home before.

My teeny tiny...a few months old.
"failure to thrive"

Not only was Madeline coughing often she was not gaining any weight. After discussions with the doctor
and many second opinions ,we decided to admit her to the pediatric care unit. She had gotten a Staph infection in her lungs from the previous hospital stay. Madeline had been home for 2 weeks  since she was first born. She stayed in the hospital for another 14 days and was given IV antibiotics.

Madeline was 3 months before she was able to go home again for any length of time.

We started over once Madeline got home. I had to learn how to take care of a baby since I hadn't needed to those 3 months that Madeline was in and out of the hospital. Jack was able to reunite with his little girl for a few weeks before finishing his deployment at sea.

When Madeline turned 6 months, we were all reunited and FINALLY were able to become a family!!!

Great Strides 2009
Our "first" walk


  1. The Hammonds LOVE the Longs! This blog is beautiful, Sandy. What a great way to bring light to a disease that so many know so little about. Madeline is just like her Mommy...a feisty, sassy little girl! You, Jack, and Madeline are ALWAYS in our prayers. We're looking forward to our second "Team Madeline" walk in DC!

  2. This is a beautiful blog. Sandy, your strength and courage is admirable. I don't know how you did it with your husband away!
    Madeline is beautiful...such a fighter. Look how far she has come!!
    Much Love,
    The Stringers

  3. Sandy, it is so nice to "meet" you and learn more about your beautiful family and the journey you have been on. We have had very different beginnings of the CF journey! I can't imagine what it must have been like for you and your family to go through so much so quickly. And with your husband away!! Let's just say you should have warned me to have a box of kleenex handy when you shared your blog with me. Thank you for sharing and I will continue to follow Madeline's story!


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