June 03, 2014
Story told by Roxanne Williams, mother of Olivia.
I donate on behalf of our daughter Olivia. It's our time to give back. Olivia was born in March of 2002 with something called jejunal atresia, wherein her small intestine was completely separated. She was sent by ambulance the day after she was born from Lockport Memorial Hospital to Buffalo Children's Hospital, where she would stay for the next ?ve months in the NICU. She couldn't absorb any nutrients and was quickly placed on something called TPN, which is an IV nutrition. She had many surgeries to correct her intestine, a broviac was placed and a feeding tube was placed within a couple months.
She was so young and small and was on TPN 12 hours a day that her liver started to fail, and she was in dire need of a liver and small intestine transplant by the time she was 5 months old. She was ?own from Buffalo Children's Hospital to Pittsburgh Children's Hospital for a transplant evaluation and was listed in August of 2002.
When you have liver disease like her's, you tend to bleed a lot because your clotting factors are off. She developed these ulcers in her small intestine and would bleed all the time. She needed blood transfusions quite often. One night in October of 2002, we were in Buffalo Children's, and her bleeding was out of control. They ?ew us to Pittsburgh that night. It took a while for the GI doctors to stop the bleeding, and she needed several transfusions to get her hemoglobin up to an acceptable level.
We were there for about a week, and the night before we expected to go home, a transplant nurse came into our hospital room at about 4am and said "Olivia is going to get her organs. The transplant team is on their way with them now." We will never forget that moment. We thought, oh my gosh, our prayers have been answered, but at the same time, we were scared. We had no idea what we were getting into either. Her surgery was 16 hours long, 15 doctors were involved, and she arrested on the table 5 times during the surgery. She was very small, the smallest and youngest they had ever done. I think she weighed just about 10 lbs. and was only 7 months old.
She had a very difficult road to recovery. We spent 4 months in the ICU in Pittsburgh where she was intebated the entire time. We couldn't hold her, she was paralyzed and sedated, and she was still very sick. She was so small, that they couldn't close her after her surgery. They placed a device in her abdomen, and every day they would crank it just a little to close her abdomen up. That took about 4 weeks. She went through mild and major rejection, kidney failure, liver failure again, needed a lot of blood almost daily because her body started to split her red cells in half and her hemoglobin would drop to dangerous levels such as 2 and 3. So many strange medical things happened to Olivia, the doctors just wondered how much can this baby take.
Every day for weeks and weeks, I'd watch the machines, check her lab work, sit by her bedside and play music for her. We had no idea that her situation was unique, and that the normal course of a transplant is about 3 months. She ended up in an isolation room in the ICU because she was so sick and needed lots of attention throughout the days and nights. She had a-pheresis to help ?lter her liver, dialysis to save her kidneys, and transfusions to keep her blood counts up. She was back on TPN because she wasn't growing and absorbing any tube feeds. So, after months of battles, she stabilized, and in April of 2003 we got discharged from the hospital for the ?rst time since November 2002. We stayed in Pittsburgh in a hotel until June and then were able to go home.
She still bled, she was still on tube feeds, TPN, IV medicines, but we could care for her at home with the help of visiting nurses. I kind of became a nurse with her broviac changes, ostomy bag changes, infusing TPN, tube feeds. We were still in and out of the hospital with illnesses, bleeding, transfusions, but at least we got to stay in Grand Island. The transplant team decided in November of 2003 that she be relisted. She was a year and a half old and weighed 12 lbs. Her organs were not healthy, and her bleeding disorder was signi?cant. So, for about 2 1/2 years we relied on blood transfusions at Buffalo Children's and 100% TPN and would have to go to Pittsburgh now and again if she was too sick.
She was growing with the TPN, she started Early Intervention and started to walk and talk, but we knew she couldn't survive on it for a long time, or depend on so many blood transfusions. In June, 2005, the phone rang in the middle of the night. We knew exactly what it was. Bill answered the phone, and he asked how old the donor was, and a couple other questions, and then hung up. We sat there in the dark for a minute, I don't think we even spoke, we both were thinking, oh my gosh, is this going to be the same as last time? We decided to go through the transplant process for a second time, there were no other choices.
I remember having to keep a ?ash light in her crib and sneak in during the middle of the night to see how much blood was in her bag. There were times when we would have to go in the middle of the night to the hospital for a transfusion.
On June 3, 2005, Olivia received another small intestine, another liver, another pancreas, and a stomach. Her bleeding disorder she developed had to do with a clotted off stent in an artery close to her stomach so the doctors said they would give her the "whole block of organs" this time. We left at 2:30 in the morning from our home in Grand Island, and she was in the operating room in Pittsburgh Children's by 7:30am. Her second transplant took about 13 hours, no major complications, and we got to see her that night in the ICU, intebated, paralyzed and sedated, lots of pumps and tubes, just like the ?rst time. But this time, she sailed through the ?rst week without complications, mild rejections as expected, and was extebated a week after her transplant. It was amazing. She experienced some pancreas issues for a week or so but then it kicked in and started to function properly.
Needless to say, we were back home on September 3rd, exactly 3 months from the date of her transplant. Olivia has never looked back. In 2006, her ostomy bag was reversed, her broviac was removed and her feeding tube was taken out. She grew and started to look healthy. We just had our ?rst stay in the hospital this past winter in nearly 9 years due to dehydration from the ?u.
Today, Olivia is 12, in the 6th grade, loves to dance, swim, ride her bike, and play with her dog Ginger. She is a good student, has a lot of friends, and is a funny kid! We monitor her labs every month at Buffalo Children's, make an annual trip to Pittsburgh to check for rejection and biopsies of her intestines, and we do wonder in the back of our minds, will she ever get sick again? But, we also think about those donor families every day, our hearts break for them, what they sacri?ced, the decision to donate their child's organs at their darkest hour, and they are nothing short of heroes. They are remarkable people.
We also are so very thankful for the many people who decide to donate their blood at a blood drive at work, at their public library, their town hall. If it weren't for the generosity of so many to continually donate blood, Olivia would not be alive today. She is truly a miracle, and had a will to live like no other when she was just a small baby. I just tucked her into bed, and I asked her if she could have anything for breakfast tomorrow, what would she want? She said ice cream!
Tomorrow is her 9-year transplant anniversary, ice cream for breakfast it is!!
The best part about giving blood for me is that, as a mother of a child who needed blood so often to sustain her life, I know that when that bag is full, it can save up to three lives and sometimes on the day I donate, all the blood donated goes to the babies. I know how much we depended on it for Olivia, sometimes 3-4 times a week. I found it amazing that for her blood type and cross, there was always blood available for her. I donate at work, Independent Health, and I also donate at the Grand Island library if I miss the opportunity at work.
I want people to know that if they personally have any reservations about donating, the screening process is extensive, it is safe, it doesn't hurt, it doesn't take a long time, the nurses are fantastic and genuinely care about your health while you are donating, and to think of how many lives are being saved every day, and that they would be saving lives too.
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