OUR JOURNEYS

Patient story

Shannon O'Donnell

by her father, Bill O'Donnell

Shannon O'Donnell and familyHow would you feel if you brought your only child to see the doctor and was told she had an incurable terminal illness?

What would you do if the doctors wanted to admit your child to the CICU five days before her kindergarten graduation?

Eight years ago, Laura and I took Shannon to Children’s Hospital Boston. Shannon was having fainting spells. After one of these spells, we took her to the local emergency room. Something did not look right on her EKG. Her pediatrician scheduled an appointment for her with cardiology three weeks later. When asked if the appointment should be sooner, he said “it is probably nothing and three weeks would be fine.” On May 30, 2001, we found out why Shannon was fainting. She has primary pulmonary hypertension, PPH, an illness without a cure. We were told we were lucky because there is a doctor, Dr. Mary Mullen, who treats PPH and a treatment is available. The only FDA approved treatment at that time was Flolan. Without treatment Shannon would be dead in a year.

Now, here is the dilemma. You bring your child to a hospital to see a specialist. Your child has had syncope, fainting spells and from time to time has been short of breath. Doctors have told you, including other non-cardiac specialists, there is nothing to worry about. It is a vasovagal response, the light headedness you feel when you jump out of bed.  You are also told the shortness of breath is in her head. You are totally unprepared to hear the words “she could die from this, she may not wake up if she faints again.” This is five days prior to kindergarten graduation. The doctor wants to admit her immediately and if admitted there is no way she will be out of the hospital for graduation. What would you do?

It is probably the toughest decision I will ever have to make. We asked the doctor to leave the room. I looked at Laura and said “I do not want the last memory of Shannon to be we took her to the hospital.” Somehow Laura understood what I was saying and we decided to take Shannon home. On that day we discovered what a special place Children’s is. No one tried to change our minds and while we were discussing all of this with the doctors and by ourselves someone was playing with Shannon outside of the room.

Five days later, Shannon graduated from St. Raphael’s kindergarten. It was the best graduation I have ever attended. It was also the toughest graduation I have ever had to attend. I was on the edge of my seat. Not like most proud parents because my little girl was graduating kindergarten, but because I was praying that nothing would go wrong with Shannon. I do not think I ever took my eyes off of her. In fact, even though I was physically present at the graduation ceremony, I would remember very little if it was not for the videos. Shannon did a great job at graduation. For many people she stole the show.

This Monday night, Shannon graduated from the McGlynn Middle School. Eight years ago I never imagined I would see this day. I was the proudest dad in the audience. Once again I was on the edge of my seat. This time it was not because I was worried something would go wrong, but because my little girl was graduating middle school!!!! Congratulations Shannon!!!

If I have learned one thing these past years it is to celebrate the little things, so celebrate with me. Sing your favorite song at the top of your lungs or get up and dance around the room. If people look at you funny share the joy with them. Have your favorite meal, drink or desert. You can go back on your diet tomorrow. Just do something to celebrate. Most importantly do not forget to say a prayer of thanksgiving for eight wonderful years.

Thank you all for the support you have given Laura, Shannon and I.


FacebookGoogle +TwitterLinkedInPinterestInstagramYouTubeBloggerFeedsPHAware Download our App

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2014 Pulmonary Hypertension Association. All Rights Reserved.

NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.