Corrina's Story as told by her Parent's

Corrina’s Story

Corrina loved movies, especially Shrek 1 & 2, Mary Poppins and Garfield. As well as other life-like movies. She didn’t eat much, but she loved her water! She sucked on anything salty, spicy or sour. She loved lemons and pickles. She had a blanket that her grandmother had made for her that was soft like a teddy bear on one side and satin on the other with all sorts of different ribbons protruding from all sides of the blanket. That was her favorite, her “Taggy”! She would rub the satin side until she fell asleep. As she would mommies pajama’s too!!

If we could tell the general public one thing about chILD, it would it be that we wish there was a cure, a better understanding, and an answer for chILD. So that other children would not have to suffer as Corrina did. We would like to make the public more aware of this disease, show the importance of this disease, and why we need to get funding to study this disease even more.

Living with chILD has impacted our family in different ways. We have watched our daughter struggle on a daily basis. We have watched her not be able to enjoy the simple things in life as our two older children have, such as playing outside, running around without tubing, going places and not having to worry about germs. This was very hard on us as parents as we all want nothing but the best for our children. Not being able to provide that was so hard. Our two older children have grown with a wisdom and knowledge that no child should know or ever have to worry about. Knowledge that is so extensive and so deep that it is un-comparable yet not even understandable to children or adults alike. Although life was very stressful, we grew together in so many ways. But nothing will ever completely heal the loss of our precious daughter.

This is Corrina’s story, told in the words of her parents...

The Beginning:
It started on that very beautiful, wonderful yet frightful day of December 10, 2003 in San Diego CA. Corrina was born with what appeared to be no complications. Until 10 minutes after delivery when we first held her in our arms. We knew something was wrong, very wrong. Her scores went from great to the worst you could have, in 10 minutes time. Within two hours she had been rushed out of our arms and downstairs to NICU where they had her on all sorts of treatments including medications, Nitric Oxide, and the oscillator. They tried everything and nothing could help her to bring her oxygen saturations up. Every few hours the doctors came in to give us updates. They would tell us “Worse case scenario…”, and every time they came back, it was that worst case scenario that had taken place, so the next “worse case scenario” was given and yet again it happened.

By midnight that night she had been transported to the local children’s hospital where she was placed on ECMO (a heart/lung bypass). They had not given her much time to survive and at one point said that after 7 days her chances of survival was very slim. When 7 days came and went and she was still on ECMO they said that after two weeks her chances went down even more. Two weeks came and went, still on ECMO. Then on the 17th day of being on ECMO, she finally came off! She did not just wean off the ECMO, she just popped right off of it. What a wonderful day it was, a real miracle! She remained on the ventilator for another week after that when she was weaned off of it completely! Corrina would be ill and then just pop right out of it. There was not a lot of time weaning with her.

From there Corrina survived on her own, even if she did have the help from oxygen and a large regiment of medications. For 2 years we fought with doctors and nurses about her breathing, oxygen requirements, her physical abilities, appearance and her emotional well being. The doctors telling us that they don’t know what was wrong, that we can only hope she will outgrow whatever lung disease she had. They originally diagnosed her with Pulmonary Hypertension (PH). It was apparent that she had another lung disease which was causing the Pulmonary Hypertension, and it constantly made the doctors think that she just suffered from chronic pneumonia. But all the bacterial and viral tests always came back negative. They couldn’t explain it, and they didn’t try. On top of that we had teams of doctors placing “blame” on other teams of doctors. It was nothing but a vicious cycle of blame, lack of knowledge, and lack of care to figure out what was going on.

The First Move:
So, out of concern for Corrina, the better well-being of our family, and frustration with the doctors in San Diego with the lack of care, wisdom, understanding, and unwillingness, we took her to TN to see what we had hoped would be more caring and understanding doctors. After a lot of research, we moved the entire family from San Diego, CA to Crossville, TN. We were part of the PH Foundation and heard that they would had programs for moving with people in the same medical boat. After contacting them and nearly getting full approval, we found out that the programs were meant for people other than children!!! We were so upset, they could not help children but there were so many children out there with such ailments! Once we got to TN on our own we realized that our hopes and wishes were granted. The doctors were wonderful and on her first hospital stay after our move to TN, the doctors examined Corrina as well as her past medical history. The hospitals in TN tested for so many more things than the hospital in San Diego ever did. They were actually surprised that some of the tests were not run at all. The staff at both hospitals (Knoxville and Nashville) were really amazing; they actually cared, had compassion, and wanted to learn more about Corrina and our family. It was then, after 2 and a half years of struggling to find an answer, we found that Corrina was suffering from a very severe chronic ILD. The new question was can we figure out which disease it was specifically, how to treat it, and how to learn more about it.

They ran blood tests, genetic tests and made medication changes. They tested for every known ILD and nothing. We were hoping for an answer, but all the tests came back negative. We all knew that she had ILD, but all we knew was that is was an extremely rare form and case that it has not yet been found. In the year that we lived in TN Corrina’s condition became critically worse very rapidly. Her medications were increased to the maximum dose allowed for her age and size, her oxygen requirements went from 2 liters per minute to 5 lpm. She was tired all the time, and had no energy to do her physical or speech therapy, or even sit up through an entire movie (which was very odd for her). She was constantly being hospitalized due to a cold or something that would be simple for any other child to handle. Her hospital stays averaged one stay a month her entire life, 3 and a half yrs, sometimes more, lasting anywhere from 3 days to 2 weeks. In total, Corrina had spent more than ½ of her life admitted in the hospital. Each hospital stay involved a lot from us as a family, our jobs, and Corrina’s sibling’s school! From dad and mom taking shifts at the hospital, making sure the other 2 kids got to and from school, to and from babysitter, to and from the hospital, making sure that dad was not taking off too much time from work, and so many more things!

Corrina was the most wonderful, precious child. There was not a person who did not meet her, whether in person or through the chILD parents support group, that did not love her! She was a happy, fun loving child that loved her water, and her movies (Shrek and Mary Poppins, we know them by heart!). She loved to just sit and hug on anyone that would pick her up. She blew kisses and always had a smile on her face (except for when they needed to place a new IV; but hey, would you be smiling?) She would hug you and pat your back while you patted hers, she would give you kisses on the cheek and then demand that she have her movie or water! She was a fighter, the toughest little girl (or just about anyone) we and many other people have ever known, yet she had the spirit of an angel. To us, she is an angel. She had the greatest personality that no one could refuse to love. She had the heart and spirit that no one we know ever has. Her body just could not keep up with her great spirit. She was learning things so very fast day by day, amazing us all with her new accomplishments. She learned to communicate through sign language, and lots of pointing. She loved going to church to praise the Lord and listen to the singing. She was a VERY BIG DADDY’S girl and let everyone know it. She was a very happy child all the way through even with all that she went through in her life. She touched the hearts & lives of many nurses and doctors. She was a patient that they enjoyed to have. We remember hearing nurses argue over who was going to watch her that night. Corrina taught a lot of nurses that there is not only sadness in hospitals. Nurses see and deal with a lot of hard and terrible things, especially when they are dealing with children in those positions it makes it even harder. I have never met someone is a hospital bed that was in a good mood, Corrina was the one that attracted nurses and doctors from all over the unit so they could have their smiles and warmth for the day.Unfortunately taking Corrina out into the public was a near impossible thing to do, so we spent a lot of time indoors when not at the hospital. People would always want to touch her and get close to talk to her. Outside germs would get her ill. A very minor cold to a normal child that you would not even call your doctor on would hospitalize Corrina for at a minimum of a few days.

Then on January 1st, 2007 Corrina became terribly sick with walking pneumonia. She was, that night, placed on the oscillator which she remained on for over two weeks. Doctors didn’t think she was going to pull through, but yet again she did. They could not however get her off the ventilator. Her lungs were too damaged and too sick. The doctors placed a tracheotomy and she was finally able to wake up! We knew that it was going to be hard, that she would need to depend on the ventilator even at home. It would also be very hard on Nina, not being able to vocalize the way that she used to with her famous “uh-hu”, trying to get our attention, or to vocally show how happy she was all of the time. But we feared that another hospitalization like that would most likely be her last. We made the decision that we wanted to do all we could to give Corrina the chance at a much deserved, earned, and more normal life, a life with out machines or tubes to breathe.

To Texas:
So on February 6th, 2007 her and mom were flown to Texas Children’s Hospital where she started her three month stay for a lung transplant evaluation. Corrina & Mom left behind her Dad and Corrina’s two siblings in Tennessee until moving could be arranged to Texas for the entire family. This was especially hard on the entire family! Dad stayed with the siblings (which included making sure that they got where they needed to be, homework, baths, dinner, babysitters, play time, shopping, and what every other normal family needs to do), he worked third shift, and eventually had to start packing the house up for a move. Mom stayed at Corrina’s side and kept the rest of us updated.

While there in February, mom had the opportunity of talking to Dr. Fan himself who gave us the most bothersome news. They thought that they had Corrina’s disease pegged, if only you could rely on a lung biopsy alone, it had all the classic symptoms of ABCA3. But the blood work came back negative. They couldn’t find it. Mom remembers him saying that the gene is so big and they can only look so far into it, that perhaps the malformation is there, but we are just unable to find it at this time. Still we have no answers or ideas as to what Corrina suffered from, or how or why.

The evaluation period was only supposed to take a few days, but Corrina had so many other complications, they felt that it was in her best interest not to. The docs were not even sure if they could handle all of the complications at once. We learned that they also base the transplant decision on the family’s involvement. Sadly, we learned that there are a lot of families out there that do not want to take the time off of work to bring their child in for regular appointments. We felt that it was the best thing for Dad and the kids to move to Texas to show that we are very involved. It was a complete leap of faith! Even if we did move down there, leaving a lot of things back in TN, there was no guarantee that she would be approved. So we left it in God’s hands and had total faith, when they got to TX, Corrina was approved!! They were completely amazed at the dedication and love that we had for our child. The approval took weeks rather than days. She was never discharged from the hospital again. Dad and her brother and sister came out at the beginning of March. Once we were approved we spent a month with a pager on our hip waiting for the perfect match to come for Corrina. We had an apartment there in Houston which we hardly ever stayed at. We spent every waking moment we could with her, and nights too. Dad was able to transfer jobs through his company to Houston for the time that we were there. Dad and mom would trade out nightshift, having to try and evenly split the time between all of the children, and ourselves. Patrice’s mom came to Houston and offered to care for Lilly & Ryan in CA so Patrice and I could concentrate on Corrina. At the time it seemed to be a heaven-sent deal even though we would miss the kids dearly. Little did we know that what we thought was a heaven-sent deal, turned out to be a nightmare later on. Once the kids were off to CA, we concentrated all of our efforts on Corrina. Our van rear seats were removed so that we could stock everything that we needed to live at the hospital! We basically lived out of our van. We had it all arranged and organized so that there were clean clothes, dirty clothes, food, personal items, computer, printer, and so much more. Our apartment that we were renting ended up being a storage unit for the very few items that remained, and a place that we can go to every few days to wash our clothes.

Transplant
On April 10th, 2007 Corrina had her double lung transplant. The surgery went a lot better than planned and the following day she was awake and demanding her water. We were told that it was unusual to be up that soon. But that was the last time we saw her awake. She fought for a month, the hardest fight ever of her life. The fight included the new lungs being rejected, that she was fighting a viral infection, the mental/physical ability at an age so young to hang in there once again through another and a new life-saving procedure. After fighting very hard (procedure after procedure, doctor visit after doctor visit, hospital admit after another, cold after cold, new meds, med increases, formula changes, body function, machines, ECMO, Trach, ventilators, and so much more) day to day for over 3 years, she put forth the hardest effort ever to survive. Every ounce of energy, ability, and effort was given an extra boost for one last time. Unfortunately, we had to give her a very toxic antiviral to try and stop the fatal viral infection that she had which caused her kidneys to go into failure and therefore required that she needed kidney dialysis. There was a very good possibility that the donor had received trauma which caused there to be bone marrow in Corrina’s new lungs, for which they treated with Plasmapheresis that cleans the blood on top of a dialysis machine.

The Final Fight
We stayed by her side 24/7. Sadly on May 9th, 2007, after talking to the doctors and knowing that there was nothing more we could do to help her, we made the most difficult decision that we hope that parents would never have to make. After being in a multi-system failure for a while and making the last dive that she could make without any hope of returning from it, we had decided it was time to let her go and be with God. She had past the point of no return on recovery multi-system failure. We would only do more harm than help to her should we continue the machines, treatments, and medications. Already being maxed out on all medications and support, with the muti-system failure, there was nothing more we could possibly do to save Corrina. She would only horribly suffer with any attempt to save her. We still don’t really know what went wrong, and the doctors have their theories, and ideas but nothing has been proven yet. We just know that the Lord had other plans for Corrina and decided to take her home so she can no longer suffer. Corrina served her life here on this earth, so that morning of May 9th, 2007 we all sat in her room, turned the machines off, the room quiet for the first time in a long time…and we said our last goodbyes. We gave our last hugs and kisses, held her one last time until she left this world in her loving father’s arms. We are hoping to use Corrina’s experience as an example as to what to try and not try with future lung transplant patients.

On May 09, 2007 @ 5:38am we lost the world’s greatest fighter, most precious, most beautiful, most personable, and most joyful girl, daughter, sister, granddaughter, great-granddaughter, niece, and friend. She had fought the toughest and most painful battles in her life to keep herself alive, battles that so many other people and kids give up so early in. While she was in a never-ending battle for her life she had the greatest personality that no one could refuse to love. She had the heart and spirit that no one we know ever has. Her body just could not keep up with her great spirit. We had kept our hope, which never failed but to grow, that she would beat whatever had gone wrong and prove the doctors wrong, as she had done so many times in the past. But it was not to be this time, she fought an awesome fight and no one could have done it better!

We decided that we wanted to have a memorial service there at the hospital for Corrina. We wanted all the staff that was involved in her care and anyone else that wanted to join, to come and have start the closure process together. This has never been done at Texas Children’s Hospital in all the years that they have been open. A lot of people worked hard at getting this together. The chaplain put together the service to include keepsakes, and a service that was Catholic and Baptist oriented. He did an awesome job! We requested that it be filmed if possible. It was filmed and turned into a DVD & VHS for us! There was barely any standing room (respectfully). We were told that this has never been done and that they plan to offer this to all that need it and that Corrina will be remembered for each one that is to come. See, Corrina continues to touch lives and move mountains!

We pray that NO parent has to go through this. We pray that some day they find a reason and a cure for these ILD’s that our precious children suffer from and cures for many other diseases that are out there. Corrina left more than just a mark in life; she left a real legacy across our great nation. We hope that her story will continue to help others to be aware of what our children suffer through and the daily struggles that not only do they have, but us, as their parents have as well. We hope that Corrina’s legacy will forever fight and touch the hearts of everyone!

We can still picture Corrina sitting in her crib in the hospital room watching a movie, laughing. Looking at us and smiling and waving to all who pass by her room, begging them to come in and pick her up and beg for her water. We love you Miss Corrina! There are so many who miss you. Walk with the Lord now our dear sweet Corrina, we love you so much!!


Love Always and Forever,

Mom and Dad