OUR JOURNEYS

Memorial story

Jordyn Cathryn Turner (05/08/02--09/10/04)

by Jenny Turner

This is a story of our daughter Jordyn’s much too brief life.

Jordyn was born on May 8, 2002 at HEB Harris Hospital. She weighed 5lb 15oz. She was a beautiful baby girl. When she was born she was rushed to the nursery to have her lungs suctioned, because she had swallowed too much amniotic fluid and her lips were turning blue. When she was 3 months old we noticed that she was not breathing normally. After an incorrect diagnosis of asthma our pediatrician referred her to a pulmonologist at Cook Children’s Hospital in Fort Worth, TX. He decided that Jordyn needed to have an esophogram study and a broncoscopy. The results of the first showed that she had reflux, which she started taking Prevacid, and Raglan for. The bronco showed that she had a paralyzed left vocal chord and tracheal malaysia. Neither of the two diseases should affect her long term, we were told that they would heal themselves.

When Jordy was about 10 months old a nurse practitioner at our Pediatricians office listened to Jordyn’s heart and thought that she heard a murmur. So she scheduled us an appointments with a cardiologist at Cooks. He did an echocardiogram and found that she needed to have a PDA closed and she had a left coarctation of her aorta. He recommended surgery immediately. We opted for a second opinion, since she was so young. In February of 03 we met Dr. Ring, who reviewed her files and decided that she did indeed have the problems that the other Dr. had seen. Jordyn had surgery in March and then was under the follow up care of Dr. Zellers. She did so well during and after surgery with no problems at all. In her second day in ICU she pulled out her art line, so they transferred her to the floor. Her second day on the floor she pulled out one of her other IV’s. At that point the nurses consulted with Dr. Zellers and they decided that it would not be long until she could go home. She was such a curious child, she was learning to walk, and so we spent many hours while at the hospital roaming the halls. Once it was time to pull her drain tube out, they were all surprised, she didn’t cry at all. Dr. Zellers decided that she should be a poster child for postoperative co arc repair.

Six months went by and we had our post op checkup and all looked good, so we weren’t scheduled to return for another year. At her year visit he did another echo, which showed just that her heart was still enlarged, but he didn’t think much of it. Maybe there had not been enough time for it to get smaller again. About 9 months ago Jordyn began to have what we thought to have been seizures, she would whine and then just pass out, sort of like fainting. We spent many long nights at the emergency room and numerous trips by ambulance to the ER. No doctor could ever find anything wrong with her once we were there, because the spells were over by that time. Time after time we were sent home with no diagnosis or treatment. I explained to Dr. Z what was happening and he suggested that we see a neurologist to make sure that it wasn’t epilepsy.

We saw a neurologist at Medical City Dallas, who determined that it was breath holding. I thought what an odd diagnosis and did not feel that it was valid. That same day we went shopping and Jordyn had one of her spells in the dressing room at Kohl’s, this one longer than normal, so we again called for an ambulance and were sent to Cook’s. Once there the Dr. called our neurologist we had just seen and then came back to tell me the same thing. I remember being so angry and frustrated, I didn’t feel like they were looking at the whole picture and digging deep enough. As a mother I really felt like there was something that they were missing or something else wrong. So we left again with no diagnosis other than what the Dr. had said.

In July 04 Dr. Z requested another echo to check and see how her heart was doing. To his surprise he found that it was worsening. So he scheduled a catheterization in the lab the following week. The cath showed pulmonary hypertension and the pressure in the chambers of her heart were very high. She was transferred yet again to ICU because she doesn’t tolerate the sedation well and had to be on the ventilator. She came off the vent the following day and then we were moved to the floor to evaluate her and make sure she was ready to go home. We were waiting on Dr. Barst; a Dr. in New York, who the team had called to get help in deciding which treatment would be the right and most effective for her. Jordyn was sent home with oxygen to wait for news about treatment. Once home things were normal until we got the call from Dr. Fixler, who Dr. Z had transferred us to for care, called and said that Dr. Barst had recommended an infusion pump that would administer prostacyclin. So surgery was scheduled to place the pump the next week. It should be a minor procedure they said, and we should be in the hospital for 5-7 days to see how she takes the medicine.

On the day of surgery I went in with Jordyn alone at 6:30 am. Jeff was working and my mother was to bring him later, since it was to be since a simple procedure. Dr. Darrell Herman a pediatric surgeon was called to do the surgery. He talked with us and then they took her back at 7:30 am. This was the last time that I saw my baby girl, the last thing that she said to me was, “I want Cheetos.” I remember telling her go with this nice lady, the nurse, and she will get you some. About 45 min later they called me into a room, fortunately by this time, my Great Uncle Bubba was there with me. I kept thinking, oh my-gosh, they are already done, that was fast. I went into the room and a chaplain, and a Dr. and a few nurses joined us, which I thought was very odd. The Dr. said that they were in the middle of administering the first IV fluids and Dr. Herman was scrubbing in, and her heart stopped. I just stood there thinking, ok Jenny they are going to tell you that it started again, and everything is fine. But the news was very bad. They said that they were doing everything in their power to revive her. It seemed like forever and an hour went by and they came back again and said that it had stayed down for 40 min and that they had decided to start her on ECMO. For those who are unfamiliar with ECMO it was explained in brief to me as, a heart and lung bypass machine that allows your heart and lungs to rest and revive themselves. Once they got her started on ECMO Dr. Herman got the line in and they finally got her transferred to the CVICU. Once in ICU it was quite some time until we could visit her due to her being on so much equipment. Finally we were able to go back and see her and, oh my- gosh, it was so scary. She had so many tubes, lines, and wires attached to her.

On Thursday the day after surgery they took her down stairs for a CAT scan. It took about 2 hours to get her down and back up, since they had to take ECMO down with them. The results of the scan were good; she had no blockages or abnormalities of her brain as a picture. Then a neurologist saw her and he said it did not look good because she had no reaction to pain. This was a sign of a major head injury. I just remember I kept praying that tomorrow she would wake up and be fine. Later that day they did an EEG that showed she had some brain activity but not enough to withstand the injury of being without oxygen to her brain for 40 minutes. The Dr.’s kept telling us that her cardiac functions were starting to work for themselves, but they did not believe that she would ever be able to be a normal child again. I prayed and prayed for God to tell me the right thing to do that night. The next morning Jeff and I talked and decided that what we were supposed to do was take her off the ECMO and unplug the vent. This was the hardest decision that I think a parent will ever have to make. Our family and friends all came in to say their goodbyes and we accepted the fact that she was gone the morning that her heart stopped on the operating table.

Her service was beautiful and there were so many family and friends there. It was truly amazing. I have decided to pursue a career in nursing since Jordyn’s passing, so that I can one day help ill children. We are grieving and trying to cope right now, but with God’s help we will get thru this tough time. She was a precious, special child, which is one of the things that Dr. Z always told me while he was caring for her. Everyone who met her was instantly captivated by her winning smile and outgoing personality. Strangers couldn’t help but stop to observe her joyful spirit, and they were usually delighted to receive one of her grins and maybe even a “Miss America” waive.

During all of her two years Jeff and I worked full time rotating time off to be with her when she was ill or in need of us. Our parents also took off work some to lessen the burden that was placed on our shoulders. Bills were hard to pay at times and we sacrificed many things for her care and treatment, but she was the most precious thing and we would have done anything possible to make her happy. I had wanted to go back to school right after she was born, but that was not possible due to her being ill and me having to work full time to make ends meet. We applied for all kinds of help, social security, Medicaid, food stamps, Wic, whatever we could get and we continually got turned down because we chose to work and earn a living for our family and not live off the government. Somehow we managed through this tough time that wasn’t easy at all, but when you walk with God, I believe he makes all things possible.

It has now been a full year and almost 2 months since our precious child lost her battle with PH. We are now in the middle of trying to figure out how the Dr.’s missed her condition. We will always wonder if she was born with the condition or if she suffered this condition due to negligent acts. We will never know, but pray every day. I miss my baby girl every day, but we will keep pressing on.

 

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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.