PHOTOS BY NATALIE SINISGALLI
Julia Yaw is the regional director for the Northeast Kidney Foundation of Rochester and surrounding regions. She is an avid advocate for sibling rights in the foster care and adoption community, organ donation and transplant patient advocate. She enjoys public and motivational speaking, and focuses on several humanitarian efforts.
Seven years ago, after experiencing the loss of our stillborn daughter, Natalie, my husband and I never expected to be approached with an adoption at her funeral. We didn’t think we should take on that challenge with our loss being so recent. We originally said no, but within a few days decided maybe we should look into it. Afterall, my husband was adopted and it took his parents 17 years on an agency list before they would receive him. Maybe the responsible thing to do would be to look into this…?
Although my husband and I will have been married for 12 years this July, seven years ago began our whilwind story- the greatest story of loss, trial, tragedy, sickness replaced with health, corruption replaced with justice, love, redemption, miracles that were seemingly impossible, heroism and life I have ever heard of. I’m thankful to have survived it all… but I’m honored that this story is mine.
The first thing you should know about a trial is the definition. Merriam Webster has a few, but what I will refer to is this one: “A trial is a test of faith, patience, or stamina through subjection to suffering or temptation.” The second thing you need to know is that trials come in seasons.
Already in the middle of a season full of trials, I remember very vividly being angry and frustrated. I was at lunch with my husband Doug and my friend Hunter and I opened up two fortune cookies.
We had just buried our stillborn Natalie and sacrificed everything we had, including our careers in Virginia. While we were in NY, laying our daughter to rest, we were approached graveside about adopting a soon to be baby boy in New York. We left everything. We moved home. Truth be told- I wanted nothing to do with adopting. But…I mean, why would we be in Rochester? Why would we be approached graveside to adopt a baby boy? Seemed like God was lining things up- I mean, people wait years on an agency list. I had everything ready for our daughter Natalie; a little girl, but now here we are waiting on a little boy.
Still at lunch, we had just received a call that we may not be getting the boy we were promised. This is where the frustration and anger… really anguish, set in. One loss, now potentially leading to another.
You could imagine the confusion on my face while we’re at lunch— when I opened 2 fortune cookies. I looked at these fortunes that said “your fondest desire will come true within this year…”, the second reading “Daughter.”
I had no idea what my fondest desire was, but I would learn.
The adoption of the little boy would fall through a few months later. What I now know is that God is perfect with his timing. On the same day, my friend Ryan would call me to check in. He would tell me he threw our names in to adopt a baby girl. I’m thinking- “Are you nuts!? No way!” No way could I pursue another baby with no time in between… and I’ll never forget what he said:
“You have a choice. You can do something, or nothing at all; but I would encourage you to do something…”
Read that again.
And so began the 2 month journey to our daughter Aria. “Daughter”, which would turn into a fight to save her siblings. A 5 1/2 year battle to be exact. We would take in Xavier and Elijah just a few months after that and adopt them as our sons- Aria’s biological brothers, and then finally winning visitation with the last sibling.
We were never meant to be back in NY to pursue that baby boy- we were here to receive the family God had spoken into existence long before we knew…
There is a lot of detail regarding the adoption process missing here, but I will save that for my “someday” book.
What I want you to hold on to is this: what you’re facing today, does not have permission to rob you of your tomorrow.
Though death is permanent, it’s tangible, it was evident- we no longer would be expecting our daughter; it was NOT allowed to rob us of our tomorrows. It was not allowed to rob us from the family and joy we would recieve. We kept going, we kept fighting, we kept believing amidst all the adversity– we held on to faith and hope, a hope that was always in anticipation for what COULD be instead of what was.
Did I tell you that after we lost our daughter Natalie’s heartbeat we became those crazy people…
I mean crazy.
After losing Natalie’s heartbeat, I wouldn’t give up. I prayed for her heartbeat. I prayed until I saw her move in the ultrasound and she did. I prayed until I and the doctors could feel her kicking my stomach… and she did.
“There was no scientific reason this was happening”, is what the doctors told me. They would not terminate my pregnancy. Thats ok. I didn’t want them to.
I didn’t pray for Natalie for a few days, Two months without a heartbeat.
Two months without a heartbeat, or eight weeks before I said “God, I have believed you for the impossible– I have done everything I could do to save this pregnancy– if You take her, this is on You…”
And it was. May 17th, 2012, the night after I spoke those words, my water would break at home and Natalie would be born without any complications, fully whole in her amniotic sac. I remember being timid and slightly embarrassed because my husband was working for the Sheriff’s department in Virginia at the time, so of course our friends and colleagues were the ones to show up to the house and escort my daughter and I to the hospital. They would also be the ones to make arrangements with the funeral home and have Natalie placed in a casket with a transport ticket. Days later they would tell us that we needed to drive her home and lay her to rest with family. We weren’t even sure that’s what we wanted to do, but I’m glad they made the plans for us. We were so beside ourselves at the time that we weren’t in a position to decide anything…
Let me tell you about the importance of eight weeks. I learned patience. I learned how to believe when there was nothing left. I learned how to keep going.
Do you believe that timing is everything?
That’s a common phrase we hear all the time, but do you ever think about it?
Eight weeks after no heartbeat, and Natalie is finally born. Now we’re in NY holding her funeral, and we’re told, just the day before, this Pastor was approached by a desperate pregnant mother who needed an adoptive resource for her son. Apparently, he couldn’t find another family to step in and he kept seeing our name.
I said no, but something told me to reconsider. When that adoption fell through, it wasn’t a day later, that we received a call about the potential adoption of a baby girl. In fact, my friend Ryan didn’t even know that the first adoption had fallen through. He called the same day– just to check in.
Timing is everything. Had I delivered Natalie immediately after losing her heartbeat, we wouldn’t have been here in NY to be approached by the pastor. Had the Sherriff department and Funeral home not made plans for us and tell us exactly what we were going to do, we would not have come back to NY. Had we not pursued the first adoption and sacrificed everything we had in Virginia, we would not be New York residents to take in Aria. We would need to be New York residents to take her and her brothers, unlike the first adoption.
Aria would be the third baby we would be expecting and actually receive in an 8 month span. My hope for Natalie would be the start of this journey.
Hope does not deny a problems existence– it denies it a place of influence. The evidence before me would not hinder my hope and anticipation for tomorrow.
Don’t concentrate on what “is”. Refocus that attention to what could be or what’s waiting.
Sixteen months after taking in Aria and her brothers, I would become pregnant again. This time, eight months later on February 11th 2015, delivering a healthy screaming baby girl with air in her lungs and a heartbeat. Annaliese would be born at 32 weeks; eight weeks early via an emergemcy C-Section due to a diagnosis of preeclampsia with severe features. They lost my heartbeat and I coded red as they were putting the last stitch in. Anna was placed in the NICU for 3.5 weeks before she could come home- an amazing turnaround for such an early premie.
Unfortunately, I was unable to see her for the first several days.
They never understood why they lost my heartbeat during the c-section. They never understood how it came back several minutes later after several attempts. I’ll never forget waking up on a diferent floor with the anesthesiologist team and doctors staring at me with terrified looks and tears running down their face. I’ll never forget waking up and looking at them confused asking “What are you staring at?? What’s wrong!?”
I’ll never forget them shaking their heads in disbelief. They still didn’t say anything- my husband Doug would be the first one to tell me what happened.
I’m a strong believer that we wouldn’t be alive if there wasn’t another victory in front of us.
Although we had Aria, Xavier and Elijah in our custody at the time that I delivered Anna, we were still fighting four different counties to keep them together– to keep them from being seperated amidst a very corrupt system. We were in court almost once a week for the entirety of their case, in one county or another.
As stressful as that was, it became very strange that I wasn’t recovering from my c-section even several months later. After severe migraines developed, eye pain, nausea and several specialist appointments lined up, we would not have a proper diagnosis for quite some time.
I was a type 1 Diabetic since the age of 3. Diabetes developed after I contracted a viral infection as a toddler and since has become recognized as an auto-immune disease.
I would see endocrinology and nephrology a few times a year to monitor how I was doing and watch my kidney function. If you don’t know, diabetes can affect all of your organs, so more than likely, if you know a diabetic, they will almost always have more than one specialist to see routinely throughout their life.
Even though I was already seeing specialists, the nausea, eye pain and severe dibilitating migraines we’re not associated with my condition. All of the expansive bloodwork and testing done would appear nomal and dismiss all other diagnoses.
Until my Nephrologist came into my routine appointment, a little flustered. He said my kidney function was rapidly declining. He gave me a solid game day talk before he said, “It’s going to be ok. You’re young and I’m sure you have a lot of friends and people that care about you. You’re going to find a living kidney donor before the end of the year, and it’s going to be done before Christmas- you’re going to have a Kidney transplant and live a healthy life.”
Just like that. I’m sure you could imagine my horrified look as my heart sunk. Here I had just had my daughter, our other three kids to care for, and for the first time in my life, I’m hearing I need an organ transplant.
I didn’t know anything about organ donation. We’ve all seen the “Donate Life” slogan– they even ask you at the DMV when you go to get or renew your license. I never knew much about it, so I simply said no every time without a second thought. Now- here I was in need, and seemingly beside myself.
My husband and I packed up our four kiddos and went out of town for a few days. We needed to clear our heads and get away. We visited some friends in Virginia, and went to visit my Alma Mater, Liberty University. It was a much needed trip, but while there, I would endure my first heart attack.
I was 27 and 120 lbs.
After several months of not feeling normal after my C-section, unexplained and unrelated symptoms, now to be told I need a kidney transplant…and just for fun, now let’s throw in a hrart attack…
Doctors didn’t believe me when I told them. I think they laughed at me, in fact and said it was a panic attack.
Here I was, a former coach and personal trainer, with edication in pre-law and political science with a concentration in child advocacy and business, and at 27… I’m having a heart attack.
I knew I was because I couldn’t walk without being out of breathe. If you know me, I have one pace, which is a quick power walk/run. I am never sitting still. I couldn’t walk upstairs without being out of breathe– but the ONE thing that gave it away was the burning in my left arm from the tip of my middle finger all the way up to my chest. Pay attention to your symptoms.
They wouldn’t believe it because I was the perfect image of health. I didn’t look like the typical unhealthy heart-attack patient I guess, and I certainty was the youngest person they have ever had complain of such a thing.
All of the tests would come back normal, but I had one doctor who said we need to look into this, and she did.
A stress-test was ordered where they would see my first documented heart attack occur. An angiogram would have to be done, and of course this would take a toll on my already failing kidneys. The angiogram revealed that all three of my arteries were extremely clogged- not only that, they were fraying and being held together by threads. My diagnosis was CAD (Coronary Artery Disease) a genetic condition that we now know runs in my family. It was past the point of using stents; a triple bypass would have to be done, but with the images showing an extremely fatal state, the doctors and surgeons knew that time was of the essence, and the surgery may not be successful.
Instead of rushing me in to surgery, the doctors sent me home to spend time with my kids. They told me to make arrangements because they just didn’t know what to expect given my situation. Imagine looking your babies in the face– thinking you took them out of a bad situation to help them and give them stability, and now you’re being faced with a major “what-if”. What if I don’t come home…
We were devastated.
All four of my kids were under the age of 5 at the time. I wouldn’t make it to the scheduled surgery date. I would go in for an emergency triple bypass surgery on March 8th, 2016. Fortunately for me, I was assigned the best surgeon in the area– he was one of only two surgeons in the country who could do this surgery so quickly that he wouldn’t have to use the heart and lung machine. Speed was crucial in my situation, as oxygen cut off to the other organs during this surgery would cause them to fail, and already needing a kidney transplant made this a major feat.
It was probably the longest wait for my huaband, friends, family and followers- everyone holding their breath and praying for a miracle around the country, and some even around the world. The surgeon would come out and tell my husband he doesn’t know how this was not a miracle… I still needed the triple bypass and he was able to do it by taking a vein from my leg and grafting it in, but the inside looked nothing like the images they took– it looked much better, and my kidneys remained stable through the surgery. The surgery was successful and within a few months, I was placed back on the transplant list. I am confident that the fervent prayers of my loved ones sustained me.
Not wanting to receive a kidney from anyone, worried about givers remorse amidst other things, I didn’t put much effort into finding a live donor. Everything in me said no. Trying to keep my integrity and worried about moral and ethical lines being crossed and the legal parameters of what could happen wth an organ transplant, I psyched myself out more than once. Apparently, I had no reason to worry.
My kidneys held stable for several months after heart surgery, and shortly after being placed back on the transplant list, I would receive a call from someone at my church. Her husband and my husband were in a mens group together and both had been following and consistently praying for my situation. Both had already done and given so much to help support us, but this would be the first time I would actually talk with Olivia. She would ask me what my blood type was. When I said “A+”, Olivia started to cry. “Me too!” she said. “I am going to give you my kidney- God has given me complete peace over this. Before the beginning of time, He knew that this kidney would be for you…”
I was speechless. What do you say to someone who is willingly offering a piece of themselves to save you? What do you say when the whole idea of the process terrifies you?
I was polite and said thank you, but inside I was thinking “No way.” I’m not typically the one on the receiving end, as I generally live my life in service to others, so this was a hard concept for me to swallow. Even further– I felt fantastic. Despite going through what I had already been through, I don’t think in that moment I even believed I would need a transplant.
One can learn a lot in a short amount of time, and the first thing I would learn was a little dose of humility and that I had met my match because Olivia was as persistant as I was. This is the only part of my journey where I sat bavk and relaxed, because she took the reigns and there was no telling her no.
She continued with all the mandated bloodwork and testing. I’m never surprised by a miracle anymore because God has continued to be faithful to me. I never want to take that for granted. In order to be considered a living kidney donor, your GFR, (level of your kidney function) would have to be at 95%. Olivia’s function would miraculously come back at 168% and the doctors would declare she had a “super kidney”. We would also learn that Olivia and I shared FOUR antigens and were more closely matched as sisters or siblings than we were as complete
Our steps are all ordered and each one of us has been strategically placed for a greater purpose. It’s our job to seize the opportunity. Olivia did.
The date of original surgery would be November 29th, 2016– right before Christmas, just like my Nephrologist had wished for. That would be pushed back because Olivia’s bloodwork did not come back right. In that moment, we would both find out that she may not be able to donate.
Also in that moment, I again would face an emergency. The same date of our scheduled surgery that was no longer taking place, my kidneys would completely shut down, I would gain 40 lbs of fluid overnight and I would be placed on dialysis.
Olivia’s bloodwork would come back perfect after being retested, and another surgery date would be scheduled, only to be cancelled again. This time, because deceased donors take precedence in the operating rooms and on our surgery date, not one, but three deceased donors would bump us back. That never happens.
I remember being at peace that our surgery was delayed. I was wondering what the environment was like at the hospital and who was recieving a second chance at life. Maybe it was a heart transplant, maybe lung… one deceased organ donor can save 8 lives with organ transplants and 50 lives with tissue. Just one donor. Our local hospital and organ procurement office was tending to three. Three times eight is 24 people with opportunities at a second chance at life that day and who knows how many with tissue. Incredible. As unfortunate as loss is, I have come to realize how beautiful it is to be able to live on through others and give others a chance to live to their full potential, to be healthy, to cherish more moments. The gift of time irreplaceable. Organ donation provides that time.
As much reassurance as I would try to provide Olivia, it wasn’t helping. She had made up her mind that she was donating and was extremely upset that this wasn’t happening again. I told her “Olivia, you once told me that you didn’t want to turn this into the Liv show, but I am telling you that God is not going to allow this surgery to happen until you write about it. I cannot tell this story– as much as it is a part of my testimony, this part of the journey needs to come from you and you can inspire multitudes.”
Never mourn what is not working, rather; celebrate what’s coming.
Olivia didnt want to write, but she did. I still laugh about it. Olivia is one of the FIERCEST advocates for living kidney donation and has inspired individuals all over to sign up to be an organ donor, donate blood and pass life on. She has inspired at least two individuals to become living kidney donors, and they did! Their recipients are doing great from what I hear. I would encourage you to read Olivia’s blog “ THE GIRL WITH AN EXTRA KIDNEY, and my friend is in need of ONE”. Her perspective is beautiful and captivating- you won’t be disappointed.
Olivia and I would go in for a successful transplant on February 8th, 2017. I would recover wonderfully, running laps around the unit and organizing the first Catwalk for Kidneys event in Rochester within 7.5 weeks after transplant. Inspired by the grief that I saw patients endure while on dialysis, I would make arrangements to continue to host the event and others for the Northeast Kidney Foundation, and eventually become their regional director for Rochester and surrounding areas.
Had our surgery not been delayed, and had I not endured the toll of dialysis first hand, I would never truly understand how sick a kidney patient could be. I would not have understood how imperitive organ donation was and how gruelling it would be to live a life tethered to a dialysis machine three times a week for four hours at a time for the rest of your life without an organ donor. I was forunate. And then I became determined. I’m not one to watch people suffer and not do anything about it– I will always take a stand for the meek and oppressed, and so I did.
How can you repay an organ donor? You can’t really. I will live to pay it forward to the next patient; friend in line and advocate for them.
The mission of the Northeast Kidney Foundation is why I decided to join the team. The NeKF’s missiom is to improve the quality of life of those affected by kidney disease and related conditions through early identification, intervention, prevention and support services; to promote organ donation; and to empower those we serve to be an effective voice for better healthcare at the local, state and federal levels.
The Northeast Kidney Foundation is a voluntary health organization dedicated to preventing kidney disease and enhancing the lives of all those affected. Formed in 1974 as a philanthropic gift of Edwin and Rhoda Sperber, the Foundation provides services to patients, family members, the general public and clinical and academic professionals throughout the Northeast and now some parts of Western New York with the expansion of our Rochester office.
Serving as the Regional Director for Rochester, I am actively trying to be a voice create solutions and solve the problems that our community of patients are facing by advocating, educating and creating awareness. We have been able to provide emergency assistance in the form of grants, nutritional support, clothing and even transportation to dialysis treatment for local patients. I am working on starting a patient support group, providing patient outings, sending patients to participate in Transplant Games of America and providing our pediatric patients with a Christmas party this year! I am working on a unique fundraiser that will take place later this year, so I hope you will check in to our website www.healthykidneys.org and of course Rochester Woman Online for that announcement. I take great pride that all of our funds stay local to directly help patients in our community and region.
Our steps will determine our purpose and destiny.
I’m sure you thought my story ended there, but alas it did not. I’m sure there will be a lifetime of pages to turn. Much to my surprise, I would receive a phone call this past Christmas Eve, just five short months ago. The transplant team called and said they had a match!
This time for a pancreas.
It took a lot of convincing to leave my family for the holidays, but forward I went. A new pancreas would mean no more diabetes, no more shots or injections– but moreover that my body and all organs would function at a notmal healthy state for the first time since I was 3 years old.
The strange thing about a pancreas is that it is not a real solid organ, like a heart or kidney. Instead, the pancreas is sponge-like and very delicate. It is very difficult to transport them and every minute counts. The longer the organ is out, the higher the risk of damage affecting longevity of the organ. When I heard that the pancreas was being flown in from Alabama, I was even more apprehensive.
I am thankful that I know my team well. When I learned the the director and chief surgeon would be flying out himself to receive the pancreas, I was a little more at ease. He even returned to stay during my entire surgery to ensure it went perfectly. My new pancreas from Alabama was the farthest my hospital has traveled to receive a pancreas. I am very proud of their professionalism and dedication. Not only was it an extremely long committment, but this pancreas started producing insulin as soon as it was connected in surgery. That is almost unheard of.
Organs dont only save lives; they restore lives.
Five months later and I dont feel great, (as you can tell from my photos taken six weeks ago) but my labwork has come back with healthy normal levels. It will take time for my body to acclimate to this new normal, but I see new progress everyday.
I am forever grateful for both of my donors. Every moment is a gift and it is only because of them and God’s grace that I live.
“Greater love hath no man than this, that a man lay down his life for his friends.” John 15:13
I dare you to step out in tremendous faith. Believe in the impossible. Seize the opportunity and never lose sight of the treasure in your trial. Keep listening, keep opening the pages to your story. Dare to dream, dare to hope, dare to BELIEVE in what you hope for and dare to live.