My Speech- LifeGift Candle Lighting Ceremony

Last night, we attended the LifeGift Candle Lighting ceremony here in Houston, which is held annually in honor of organ donors and donor families. I was asked to be a guest speaker at the ceremony; I presented Elise's story on behalf of organ recipient families.  Elise's donor's sister, Holly, spoke just before me, on behalf of donor families, and our stories came together. Although very emotional, it was an amazing night. 

Because David was held up at work and was not able to attend the ceremony with us, I brought our babysitter with us to help with Ethan and Elise. At the conclusion of the ceremony, she said to me that she was happy she was able to attend and that she was going to register as an organ donor! How wonderful! :-)

Several of our family members and friends have requested that I email a copy of my speech, so I will post it here for anyone interested. 

LifeGift Candle Lighting -  My Speech

Good Evening.  My name is Erin Babin, and it is a privilege to share my story with you tonight.  My presence here at this this Candle Lighting Ceremony is a blessing for which I thank God, our donor, Julia, and her family.

Last month, my family and I celebrated my daughter Elise’s 2^nd birthday.  What a special celebration it was, but it was not one that has been long-planned, for Elise’s 2^nd birthday was nothing less than a miracle.

Elise was born with Biliary Atresia, a rare, pediatric liver disease, which is estimated to randomly affect 1 in 15,000 infants. It was not long before she began experiencing life-threatening complications of her failing liver, and her doctors at Texas Children’s Hospital said to us, “Elise will require a liver transplant before age 2 in order to survive.” As I processed this prognosis, I thought about what the “gift of life” would mean to us. Elise was admitted to the hospital many times throughout the 9 months that we waited for “the call” that might give her a second chance at life. She required a feeding tube; her belly was swollen with fluid, preventing her from reaching her physical milestones; she repeatedly developed dangerous infections requiring IV antibiotics to be administered both in the hospital and at home; she was followed by home health nurses; she required surgery, blood transfusions, and finally sclerotherapy to stop her esophageal bleeds. Through all of this, as hard as it was to watch our baby suffering and to accept that she needed a new liver, it was equally hard to accept that in order for this to happen, God would have to call another angel home.  

When we were not in the hospital, I found myself packing our free-time with as much adventure, love, and fun as I possibly could.  I wanted Elise to see the beach, the bay, the boardwalk, the parks; I wanted her to experience the seasons outdoors and to simply enjoy as much of life as she could. In keeping with this mission, my husband and I were at the Houston Zoo with Elise and her brother, Ethan, on Saturday, March 23, 2013.  My phone rang at 10:15 am and the nurse coordinator on the other end spoke the most beautiful words I have ever heard: “Ms. Babin, we have received an offer of a liver, and it is a perfect match for Elise.” My son lost his shoes somewhere en route to the hospital, but he would not be losing his sister.

From the moment we checked-in at the hospital, things moved very quickly, and so did the news of these unfolding events. As she was being prepped for surgery, I received a phone call from our priest who wanted me to know he would be saying a mass that night for Elise and for her organ donor. Of course, we have always been grateful for any prayers, but at that particular moment, I wanted the whole world to pray for our “donor angel”—for donor angels everywhere—for without the organ donor, there is no transplant, no hope, no gift of life. I felt very guilty for celebrating the fact that my baby would live while knowing that there was another family grieving the loss of their child; their grandchild; their mother; their sibling; their niece or nephew; their friend. The night of Elise’s liver transplant, I vowed that I would reach out to her donor’s family to express my heartfelt gratitude and hopefully to share Elise’s life with them.

Elise was discharged from the hospital 9 days following her transplant operation.  Over the next few weeks, we watched in awe as she began to thrive. She was eating regular toddler meals, no longer required a feeding tube, gained real weight as opposed to fluid…and she finally began to walk at 17 months old. She has been attending preschool with her brother since this past July, and she is now meeting or exceeding all of her milestones. Of course, she is being monitored very closely by her medical team, but her prognosis is excellent for a long and healthy life. The deep scar across her belly, however, tells the story of her battle, which she would have lost had it not been for her donor angel’s life-saving gift.

As I promised myself I would, I wrote a letter to Elise’s donor family about 6 weeks following her transplant. Due to confidentiality laws, at the time that I wrote the letter, I still did not know any demographics of Elise’s donor. I also did not know whether my letter would be delivered right away, as I was well-aware that the family was grieving and might not be ready then, or ever, to respond. I shared Elise’s story with them and simply expressed the hope that we could one day know and tell Elise about the person who saved her life.

Apparently my letter to Julia’s family was well-received, and we were blessed and grateful to have met them for the first time at a “reunion” arranged for our families through LifeGift. My family and I met Julia’s parents—Greg and Darlene Wardwell, her daughter—Ava, her sister—Holly, her niece—Layla, and her uncle, Joby.  I learned that Julia loved music—that music was her “therapy;” she loved coconut-pecan Mexican popsicles and Raising Cane’s chicken. Most importantly, I learned that it was Julia who had signed herself up to be an organ donor shortly before she passed away.  This decision on her part was so true to her nature and her intention to become a pediatric nurse.

We are so grateful to have learned about Julia, her huge heart, and her plans to save lives. She reminds us, “It’s never too late to be what you might have been.”

As a clinical social worker, organ donation has always been a significant issue to me.  I have conveyed the DONATE LIFE message and its importance while simultaneously helping to support families during the worst moments of their lives. I never imagined that I’d be standing here today sharing my personal experience regarding the gift of life.  But here I am.  My baby girl has turned 2 years old and is living, learning, and enjoying a full life. The gift of organ donation has restored life not only to my daughter, Elise, but to our entire family. 

We are eternally thankful to organ donors and to all their families here tonight.  I have my daughter, Elise, here with me at this ceremony, and this is the greatest testimony I can offer as to the power of the Gift of Life.  

Thank you.  

Elise, me, Ethan, my parents, and Julia's mom (Darlene,) sister (Holly,) and niece (Layla,) after the ceremony

Weekend at TCH

Clearly, I should have knocked on wood a few days ago when I told someone that Elise hadn't been admitted to the hospital in 7 months, since the time of her transplant. This past Friday afternoon, Elise spiked a fever w/ an axillary temp of 101.6.  She had no other symptoms, and since the weekend was upon us and the pediatric clinic was closed, I called TCH and paged the liver/transplant doc on-call. 

Well...it came as so surprise that the doctor told me to bring her in to the ER as soon as possible. We never even sat down amongst the 300 people in waiting in the ER....I walked straight up to the desk and told them that Elise was a transplant patient, and that I assume there was a more appropriate place for us to wait, considering her immunosuppressed status. We were promptly escorted to a "rapid-treatment" ER room, where the ER physician began examining her and looking over her history. Within about 5 minutes, the doctor placed her on "shock protocol," as her vitals (pulse, respirations, and blood pressure) were extremely elevated. Labs and cultures were immediately drawn and she was started on boluses of fluid in an attempt to stabilize her vitals. All of the preliminary tests were negative, including urinalysis, rapid strep test, flu swab, and check of her ears. At about 2 am on Saturday morning, we were admitted to the hospital under the care of the GI/liver team.  The goals was to search for the cause of the fever or source of infection but most importantly to monitor and protect Elise's new liver. 

Starting bright and early on Saturday morning, more labs and cultures were collected. Her fever had resolved by this point, and Elise's vitals were still being monitored but were mostly within normal range. Her basic blood work came back normal, her liver panel came back PERFECT (AST 39, ALT 44, GGT 14, direct bili 0.0), and her chemistries were mostly normal with the exception of her sodium bicarbonate level being low. Because of this, the GI team suspected an intestinal infection, probably viral, but decided to continue the IV antibiotics for a full 48 hours as a precaution until negative culture results could be obtained. When I realized that the attending MD on rounds was  gastroenterologist (GI specialist) and not a hepatologist (liver specialist), I became a little anxious, but I was okay with it....until push came to shove later in the evening.  

Around 5:00 pm, the nurse walks in my room and tells me that the attending GI doctor had ordered Elise's Prograf (anti-rejection med) to be increased--actually doubled-- because her blood Prograf level was "too low" at < 2.  I told the nurse she as going to have to page the doctor to discuss this with me and that it was completely unacceptable to make that type or order without even discussing it with me!! I was panicking.  Given Elise's known EBV issues, I know that her regular attending hepatologist, Dr. Fishman, has been working very hard on titrating her Prograf level--running it purposely very low at a level of 2.0-3.0-- in order to control her EBV, thereby avoiding serious, life-threatening complications. As part of this effort, I have been bringing Elise for labs almost every week!  I know Elise's "baseline" labs backwards and forwards, and for this GI doctor who has seen Elise one time in her life to order Elise's Prograf dose back to what it was when we first encountered EBV issues was extremely upsetting to me. I kept re-playing everything Elise's doctor has told me about his plan for titrating Prograf and controlling EBV: he will run her Prograf level as low as her liver panel will tolerate; liver panel results always take precedence over blood prograf level; major med changes should not take place based on labs obtained when there is an acute illness, as the lab results could be skewed. After considering all of this and talking to David, I.......called Elise's pediatrician at home. I was just desperate to speak to a doctor who actually knows Elise and her history as well as her history of titrating Prograf and dodging major EBV complications. After speaking w/ her, I felt more confident in my decision to refuse the suggested med change.  When the GI doctor came to the room to speak with me about my "concerns," I nervously but assertively told her "no" to the increased Prograf dose and reviewed all of the reasons that I have listed above, emphasizing the fact that Elise was very ill when the prograf level was drawn on Friday night, so it could be skewed.  Also, I pointed out, her liver panel was perfect, so unless she could provide me with a significant risk to holding off on increasing the Prograf, I wasn't going to allow it.  I said that I felt there should only be ONE doctor on ONE team adjusting a medication as serious as Prograf.  There were too many hands in the cookie jar. My "fight or flight" response was kicking in.  In a bit of a dry tone, she indicated that she understood and that she or the fellow would be back later if anything else came to light that I might want to consider. Well, I was confident in standing my ground, but at the same time, I was still very anxious, to put it mildly.  I emailed Dr. Fishman.  There was no way to know whether he would receive my email, but I suspect he receives email messages on his smart phone, so it was worth a shot. Right??  

About 40 minutes later, the GI fellow visited our room with a message: "Ms. Babin, we have received word from  Elise's doctor, Dr Fishman, that there are to be no changes to her Prograf at this time.  He has reviewed her labs and says that your suggestion to wait and re-check labs in the morning is fine.  No one will be adjusting her Prograf without first consulting Dr. Fishman in the morning."  THANK YOU!!  I slept much better after that, but still not very well.

So this morning, labs were drawn, and I anxiously awaited the results.  I know the lab results, including blood Prograf levels, are processed by 10:00 am, so when the team had not rounded by 10:20 am, I asked the nurse if I could view the labs on her computer.  BAM! Prograf level perfect at 2.6!!  BAM! Liver panel great and essentially unchanged. When the GI team rounded, they validated my instincts and understanding of the treatment plan for Elise and stated that after speaking with Dr. Fishman, everything looks great, he is happy with all of her levels, and there will not be a change to the Prograf.  Also, we were being DISCHARGED to follow up w/ outpatient labs in 1 week. SUCH a great feeling to know that I advocated well for my baby girl!  On my way home from the hospital this evening, Elise's pediatrician called me on my cell phone to check on Elise.  She was thrilled to hear to good news, and doctors would really be fortunate to have more mothers as knowledgeable about their child's  condition and treatment.

So after approximately 48 hours in the hospital, we are back home.  Elise is healthy, and we are feeling quite blessed and grateful once again.

In other news, LifeGift will be holding a Candle Light ceremony later this month in honor of organ donors and donor families.  I have been asked to speak at the ceremony on behalf of recipient families. I am so honored and blessed with this opportunity to pay tribute to Julia, her family, and all organ donors. Elise's donor angel's sister, Holly, will be speaking at the same ceremony on behalf of the donor families, making it even more special!!  The donor families and others in attendance will have the unique opportunity to see "both sides" of the story!  I am very excited, and of course, I will keep you all posted.