Our Journeys

Caregiver story

Jane Northrop

Nicole NorthropNicole is my only child. She was born in September 1994 four weeks premature with no indications that she was anything but a healthy baby girl except that she was very small at 4 lb. 13 oz. She didn't want to nurse and was given sugar water by the nurses. She lost weight and became jaundiced. The pediatrician kept telling me that everything was fine, but she was sick a lot. He didn't seem to listen to me and I assumed the doctor would know if she was seriously ill.

At about 3 1/2 years old the pediatrician told me he was concerned because she really wasn't talking like she should and he thought it was because I did everything for her and she had "no reason to talk." She was tested through the school system. I was told that all her motor and social skills were lacking and that I should put her in daycare. I didn't see the need for this but thought the "professionals" knew better.

In the summer of 1999 I put her in daycare and within six weeks she had two bouts of strep throat and two bouts of pneumonia the second of which landed her in the hospital for five days. The pulmonologist she saw for several years tested her for diseases, but determined that she had asthma when she was about six years old.

In 2000 she started kindergarten and missed over 30 days of school due to illnesses. The teacher told me that it was going to affect her schoolwork. At age seven she had an Upper GI Tract X-ray performed to see if there was any reason for her lack of gaining weight and/or constipation. At this time an electrocardiogram (EKG) was performed. Something on the report from the hospital was questionable, but when I called the doctor's office to inquire about the results I was told the EKG was normal. Once again, I trusted the doctors.

I can't remember when her fingernails started turning purple. I didn't know that this meant anything bad nor did any of her doctors ever question it. At 10 years old Nicole was diagnosed with generalized anxiety disorder, attention deficit disorder (ADD) and obsessive compulsive disorder (OCD) and put on Zoloft, which has really helped.

Nicole has always struggled to run and play like the other children. She was always the last one to finish the mile that they had to do every year and was always the last one picked for any team in PE. In 2009, I noticed that her breathing was getting worse and she would complain of shortness of breath on exertion. The allergist and her pediatrician believed it was from lack of stamina as her asthma was under control because her pulmonary function tests were always good. I also started noticing that her lips would turn blue especially in the pool when she got cold.

On January 21, 2010 I took Nicole for a check up with an emphasis on discussing her purple fingernails and shortness of breath. The doctor immediately put a pulse oximeter on her finger and got a reading of 79%. He thought his machine was broken and used another one with a reading of 83%. At this time he did a hemoglobin test which came back high. He set up an appointment with a cardiologist who called me later that day.

On January 22, 2010 when my daughter was 15 years old our whole world as we knew it collapsed and changed forever. Nicole had an EKG and an echocardiogram. We were then told that she had been born with  two smaller holes in her heart as well as severe pulmonary hypertension and Eisenmenger Syndrome. A lot of what the doctor said that day is a blur in my mind. I thought everything would be okay and we would just fix it, but I came to realize that wasn't possible. On February 2nd we were at St. Joseph's Children's Hospital in Tampa for a right heart catheterization. Nicole was in the hospital for about 36 hours to monitor her blood pressure while they started her on Sildenafil. We came home with oxygen and a repiratory therapist coming to the house to get everything set up.

I tried to find out information on PH, but all I found was outdated information that scared me to death. In July I found PHA which has been a life-saver for me. I have tried endlessly to find others who live with this disease that can offer support to Nicole, who does get very depressed and discouraged because she has nobody that understands what she goes through every day and wonders why she can't do things other kids can do.

I was honored when I was contacted by PHA for permission to use a quote that I made on the Generation Hope group which is "I try to stay positive if for no other reason than for my daughter. I will always be here for my daughter and will do anything that I can for her. If she needs to live with us for the rest of her life, that's okay. If she can't work, that's okay. Whatever is in store for her future I am right there with her." I pray every day for my daughter and all the other children and adults with this disease and that there will be cure.

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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.