Phil, Kari, Hannah & Zane

Hi there, we are Phil and Kari, Zane’s Mom and Dad.

We met on St. Patrick's Day and got married exactly 6 years later. We lived in Stockton for many years. I (Kari) worked as a floral designer and Phil as a mechanic. In 2002 we moved to Acampo, and fell in love with the country life.

We were not in any hurry to have kids, but when we decided to build our family it was not so easy. We had some trouble carrying a baby to full term. So, when we were blessed 2004 with the birth of Hannah, we were to the moon and back happy. Two and half years later, our handsome baby boy, Zane was born in 2007.

Things initially went well during my pregnancy with Zane. I was monitored very closely due to previous issues with carrying pregnancies. We even had an Amniocentesis, a prenatal test that takes amniotic fluid surrounding your baby in the uterus. The fluid is tested to see if your baby has certain health conditions. It was a very scary test. We cleared it with flying colors. Phil and I were so relieved, feeling confident this pregnancy was going to be safe and stable. Baby Zane was doing great, growing and thriving.

We look back and are still confused how the doctors and medical staff didn't catch our condition. Turned out we had Vasa Previa, a condition where unprotected umbilical vessels run through the amniotic membranes, and pass over the cervix. Only 3% of births survive.

At 3am in the middle of February, I abruptly started bleeding. The sheer volume of the blood coming out was terrifying to us.

Philip called St. Joseph’s Hospital ahead to inform them of my Vasa Previa condition as he rushed me to the emergency room. However, upon arriving at the ER, they oddly made us wait in the lobby. Philip became angry at the delay and went to the nurse’s station, holding up the clear bag of blood and tissue he had collected from the incident at home. The medical staff responded much quicker after that!

Once admitted, we were put in a room and within an hour the doctor came in to listen to Zane’s vitals. Our doctor, with concern and urgency in his voice said, “What the F*#! are we waiting for?” We were rushed in for an emergency C-section and Zane was born at 6am!

As they showed me my sweet baby boy, he looked perfect to me. I noticed his eyes (pupils) were dark, maybe even black. And his skin was very pale. We soon learned our sweet baby Zane was fighting for his life. His pupils were dilated because of the adrenaline pumping for survival. He was pale from excessive blood loss. We had no idea how dire Zane's condition was.

Phil stayed at Zane's side in the NICU while I recovered from surgery. At 7pm that night, the nurse suddenly came to tell us Zane would be rushed by ambulance to UC Davis Hospital. Philip struggled with leaving me alone at the hospital. He knew I would miss my new baby, Hannah and him, but we both knew he had to be with our son at UC Davis.

Zane arrived at UC Davis and Philip spent the next 2 ½ days watching and listening to doctors working to figure out how to fix Zane.

Our baby had lost 60% of his own blood. That blood had to be replaced, and it got complicated. Zane’s blood was compromised by the trauma. It took several blood transfusions . Sometimes he would need more fresh frozen plasma, the next he needed platelets, this went on and on. Fortunately doctors from Germany were visiting UC Davis at the time. They helped figure out Zane’s blood and how to treat it. We signed a disclosure for the hospital to give Zane a trial treatment, Factor VII. We just found out the FDA finally approved this drug in 2020.

Meanwhile, I was recovering as quickly. I finally convinced the doctors I was healed enough to be discharged. Phil picked me up, and we broke all speed limits heading to UC Davis. I was so excited. I got to see Zane for the 2nd time. Perplexed by my baby's healthy appearance, because the last time I saw him he was smaller and pale.

I told Philip that he looks so good, so healthy!

Later, Phil explained to me, “Kari, he looks so big and healthy because he is retaining fluids. He has a blockage between his bladder and kidneys, within the ureters."

On Day 3, Phil and I stepped out to the waiting area to meet my parents. Zane was being prepped for surgery to put in a Broviac line. As we sat in the waiting room bells & alarms sounded. Though we all knew what those alarms meant, we had no idea they were for our baby. Zane coded (tried to die) two times during that procedure. It was the most emotionally painful time we'd ever had… even to this date.

Next, the experts at UC Davis told us Zane would be transferred to UC San Francisco. This is where the best doctors were for Kidney failure and surgery. On that very rainy February 23rd night, we followed the ambulance to UCSF.

We missed Hannah so much, but we finally got her into the hospital to be with us and visit her baby brother.

Zane remained hospitalized at UCSF for another month. We were so grateful to stay at the Ronald McDonald House during this time. Finally, Zane was released from the hospital. vividly remember pulling into our driveway, the sun shining down and the plum tree in full bloom. I was so happy to be home with Zane.

All in all, Zane’s kidneys were compromised the most due to the devastating hemorrhage (bleed) that occurred prior to his delivery, causing kidney failure and growth deficiency. Also, the blood loss at birth caused Cerebral Ischemia, where not enough oxygen got to his brain.

This has left Zane with several neurological challenges, including: fine and gross motor skills; memory; balance; among other neurological issues. These conditions have become more apparent with growth and age. Zane takes a multitude of medicines and uses a gastrointestinal tube to take his medications every day and nutritional supplements when necessary.

We have been under the watchful eye of Dr. Marsha Lee and the Pediatric Nephrology staff at UCSF ever since that day. Zane’s UCSF check ups and blood work are done once a month.

Since the shut down with Covid, it has been especially hard on Zane. Not being able to attend regular school has left him feeling lonely. Extra-curricular activities are out of our reach right now. Also, he has just recently realized exactly what his health journey looks like. This realization is accompanied by periods of anxiousness, sadness, and anger. We talk through it often, and the UCSF social workers have been very helpful too.

Phil and I would love to donate a kidney to Zane. However, unfortunately due to our underlying health conditions, we have both been ruled out as donors. I recently required treatment for skin cancer. Phil was ruled out for complications on a glucose tolerance test.

Zane’s overall survival, growth, and medical stability comes first, and we are looking for a compatible living donor for him. He has grown and progressed but the kidney damage has been unrelenting, and the time is NOW!

We created with the help of family and friends a Fundraiser-Haunted House years ago, to help supplement the costs of medicines and our many UCSF trips, and the transplant, etc. We thank all who participated in the InZane Haunted House and to the generous people who attended.

Zane has been fighting since his birth, and we want to help him sail into a healthier adulthood.

The good news is… Zane has a chance at a much better life, with energy and wellness, by getting a kidney transplant from a live donor.

So, this is where someone can help us save Zane’s life.

We ask that you just visit this website www.ucsfhealth.org/lp/living-organ-donors to become familiar with being a possible live kidney donor.

If you have any questions you can email living.donor@ucsf.edu They are helpful and amazing!

With love and sincerity,

Zane’s Family

Kari, Phil & Hannah