Patient story

Katie Grace Groebner

by her mother, Kathy

Katie Grace was the fourth of her siblings (4 girls). All were born premature with complications in pregnancy. The earliest was my second at seven weeks early. Katie Grace was five weeks early. As the doctor knew that it would not be much longer that they would be able to hold her back he did an amnio. It came back that her lungs were under developed. He made arrangements and set the C-section day.

On that the day of her birth her tiny cry was so small I could not even hear it but the nurses in the room assured me that she was "OK"! Katie Grace (Kaitlyn meaning "pure"), my husband and I decided at that moment would be her name as we had no clue before that day. When they brought her to me to nurse I saw that her color was a gray yellow. "Normal" said the nurses. "My other daughters were not like that," I said. She would not stay at nursing right away. "Normal," they said. She lost weight and still kept the funny color when we left the hospital. "She has jaundice," the doctor said. All of my kids did, but I told him that this was different. "She is normal," he said.

I took her in every other day because I could not get her to stay awake long enough to nurse and she was still losing weight. "She is normal" they said. At two weeks old she began to pass out every time she was awake or had just eaten. "Acid reflux" the doctor said. My other girls had acid reflux and they did not pass out, I told him. "She is different," he said.

For six months I took her in and Begged him to check her heart. "I do not need to. There is nothing wrong with her heart,” he said. "It is acid reflux.” I took her to the Public Health Nurse and she watched her for an hour. After watching she sent a letter to the doctor requesting a cardiac follow up. He sent her to a Pulmonologist and a Gastorologist for asthma caused by "acid reflux.” Although the two other doctors did not see either they still treated her because she still kept passing out.

By the time she was one year old she had a six month delay in motor and cognitive skills. "She will grow out of it," the doctor said. I went back to the Public Health nurse and they put her on an I.E.P. At three years old she was one year behind her peers. Her gastorologist sent a letter to her doctor saying she has a 1/6 systolic murmur at the right heart base. "Perfectly normal," he said to me "She will grow out of it.”

In December of 2007, after repeated visits, test for brain seizures, cystic fibrosis, and now considering aspergers, a new doctor decided to finally check her heart. In his words, "You must be a very kind young lady because you have a very generous heart.” I could have passed out right there. Only that was not the end of it. A stream of test came and more doctors. On Feb 13th, 2008 we went in thinking that they were going to fix what they thought was Paton Ductus Arteriousis (small hole in her heart).

That was a day that I will never forget and that will change our lives forever. After two and a half hours Dr. Baker came out, sat down looked at my husband and I and said "Katie Grace is recovering nicely but what we found was not good. By all rights we are surprised that she has not had a heart attack yet. Her heart is enlarged and her arteries are not functioning properly. She has the worst possible case scenario. She has pulmonary hypertension! We cannot help her here and she will require a heart-lung transplant!" How can this be? Last night we were just going to FIX HER and today you say we can't. My mind went crazy with things. Thought and feelings over whelmed my body as my nine year old daughter walked into the room and I had to try to keep a sober look on my face.

Well now we have had months to find out more and learn more. The PH community has been a great place for me to learn so much more than I would have learned from any doctor or web page. But what I learned at the Conference is that there is Hope. What Katie Grace learned was that she is very special and she is not the only one. I think her favorite part of the Conference was going around showing everyone her Broviac and asking them, "where is yours?” We cannot wait for the next Conference as now I have more hope in knowing that there can and will be a tomorrow!


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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.