Well hello there!

Drum roll please for my FIRST blog post!

Thank you in advance for reading.

Here’s is why I’m so passionate about encouraging people to donate blood. And now because of our country’s critically low blood supply levels, this IS about life or death for the 4.5 million Americans who will need a blood transfusion this year – and may not be able to get one. I’m going to speak, blog, and post about this until the United States has ample levels of blood supply…

Here is my story.

I was born with a rare vascular syndrome, Klippel-Trenaunay Syndrome (KTS). It is a disorder that affects the veins and lymphatic system in my left leg and toes; which are purple in color, deformed, and loaded with massive varicose veins. I have a tendency to bleed if one of the surfaced capillaries gets scratched. Luckily this rarely happens anymore because of the support stockings I wear daily; it provides a thick layer of protection for my skin. Over the decades, I have learned to love my support stockings. If it weren’t for them; I would be in a wheelchair; unable to walk because of the pain and shortness of breath that happens when a vascular and lymphatic system are compromised.

When I was a pre-teen, I was informed by a doctor at Boston Children’s Hospital that because of my syndrome, he wasn’t sure if it would be safe for me to get pregnant, carry and birth a baby. That doctor planted the seed of adoption if I wanted to have children. I agreed with him. All I knew is that one day I would be a mother – I didn’t care how.

So fast forward, I started dating Duane, my husband to be. He was well aware that –
A: I wanted children. Three to be exact.
And B: He would have to be open to adoption if I wasn’t able to carry our children.

My husband of nineteen years is a roll-with-the-punches kind of guy. He took that information as if I was telling him – “Hey, if they don’t have cookie dough ice cream – get me the peanut butter fudge flavor instead.” This was NO big deal to him. I kid you not; He responded by saying, “OK”.

When we started the journey of exploring the likelihood for me to carry a baby, my local high risk OBGYN, Dr. Legrew told me –

“If you were my daughter, my sister, or my niece – I would tell you it’s not safe for you to have a baby. I don’t think the fetus would survive past the second trimester. I am so sorry Stephanie.”

I grieved HARD. The cycles of grief jumped around for the next TWO AND A HALF YEARS. To my surprise, I was mostly angry and defensive. I took on the stance of “Screw kids – who needs them anyway?” I tried desperately to convince myself that children would be a hindrance to my imagined lavish lifestyle of vacationing – which I wasn’t even a fan of travel at that point in my life. And then those grief waves would hit me and I would bawl in the fetal position on my bed – crying to God with my Catholic upbringing guilt – yelling to Him, “What did I do to deserve this?”

All of those years, Duane was so compassionate and literally met me where I was at in my grief. You want to adopt? Ok, let’s adopt. You don’t want kids? Ok, let’s not have kids. You want to explore surrogacy (thank you endlessly Carol Ann and Jeff)? Ok, let’s look at surrogacy. My husband is amazingly supportive like this.

Then at the advice of my high school friend Kelli – Duane and I flew to New York City to have a consultation with Dr. Rebarber, the OB-GYN expert in the U.S. with KTS and pregnancy. To put the rarity of my syndrome in perspective – I was patient number nine with KTS who this expert doctor consulted.

With the results of my head to toe CT Scans and seventeen vials of blood, he said to me and Duane in his office, “Green light. You can have a baby.” We were ELATED!

I called my parents while standing in New York Times Square. I was literally jumping for joy screaming in excitement telling them the great news! Duane and I were staying at my childhood friend Shannon’s house in Hoboken, New Jersey. Her husband Pete popped a bottle of expensive champagne to celebrate this life changing news! THAT was a great day.

On April 17th, 2007, we were well prepared. Dr. Legrew coordinated to have a vascular surgeon, Dr. Teng in the operating room (OR) to do proactive techniques to prevent any potential bleeding. At 1:36 PM, our son Brian was born by scheduled C-section, providentially to the tune of “Desire” by my favorite band, U2.

When Brian entered the world, we didn’t hear him cry. We watched as the medical team surrounded him. I can recall my husband asking in a concerned voice, “What’s wrong? What’s happening?” Then we heard a gurgled cry and Duane yelled proudly, “There he is!” As a medical team member brought Brian to me, she said, “You have ten seconds to hold your baby. We need to take him to the NICU – He’s having difficulty breathing.” After a fast hello to Brian, I asked, “Can someone please take a picture?” The Neonatal Intensive Care Unit (NICU) doctor, Dr. Esparza captured THIS photo.

In less than 24 hours – Brian was intubated, placed on life support – as he was having continued difficulty breathing. THIS was not the introduction to Motherhood that I had dreamed of my whole life. Brian would remain in the NICU for a total of twelve days.

Day three after Brian’s birth, still in the hospital, I noticed I was bleeding from my C-section site. Later that evening, I was in the OR getting my second surgery. Against medical advice, I refused to go under anesthesia because I wanted to be fully aware in the event anything happened to my newborn baby. The vascular surgeon, Dr. Teng, who was in the OR at Brian’s birth removed a trapped clot that occurs in six percent of C- sections. Dr. Legrew reassured me to not be concerned, that this fluke can happen – it has nothing to do with my vascular syndrome.

Shortly after that surgery, I was given my first blood transfusion.

Next thing I knew – I was getting transferred to the Intensive Care Unit (ICU) because I needed continued units of blood. My hematocrit and hemoglobin numbers were not improving. Frighteningly this indicated I was bleeding internally. The CT scans could not show the doctors where I was bleeding because blood was covering my organs – impeding the information they needed. Now this was beyond the norm for C-sections and my medical condition was deteriorating.

It was then that my Mother, a veteran ER graveyard nurse – began talking to the doctors about transferring me to a trauma one / teaching medical facility that had its own internal blood bank.

For the next week, I received about fifty, that’s FIVE – ZERO blood transfusions and seen by most medical departments in that community hospital.

Day ten after my son’s birth, after much advocating and coordinating, a transfer to UC Irvine Medical Center was confirmed.

Too frail to transfer to a wheelchair, I was rolled in my hospital bed from the ICU to the outside of the NICU. There must have been ten people there between my family and medical staff as they put swaddled Baby Brian in my arms. But for all intents and purposes, Brian and I were the only two people in that hallway. My husband was recording this beautiful experience. This was the third time in ten days I was allowed to hold Brian as he was medically improving and now, I was the one steadily declining.

I got transferred by ambulance to UC Irvine Medical Center at 11:30 at night.

When I was admitted straight to the ICU, a kind and gentle night nurse washed my hair for me in bed. I remember it being about 1:00 in the morning. Feeling the warm water surround my head for the first time in ten days felt so nurturing. And THAT – was when my flood gates opened and the trauma of being separated from my baby hit me like a tidal wave. I sobbed. And I sobbed. And I sobbed as that nurse washed and combed my hair as she sporadically whispered, “I am so sorry”. I fell asleep crying that morning as the blood transfusions continued.

Later that morning I met Dr. Matthew Dolich from the trauma department at UC Irvine Medical Center along with his team of medical residents.

He wrote an order that I was not to eat or drink anything. He told me, “It’s a matter of time until we do surgery on you – we know you’re bleeding internally. The problem is, we don’t know what we’ll be doing surgery on.”

Less than twelve hours later, experiencing horrific abdominal pain, I asked my ICU nurse to please call my Mom. It was after midnight that my mom got the call. It was 1:23 in the morning when I saw my Mom rush into my hospital room.

The expression on her face told me she was concerned. She could see that I was about to go into shock. She asked, “Steph, what’s wrong?” I answered, “Mom, I can’t breathe…I’m going to pass out”. She ran to tell a nurse to call “code blue”.

At 1:26 in the morning on April 29, 2007; my heart stopped. As I felt 2 chest compressions, time stopped.

I had a quick conversation with myself. I said, “Steph – if you fight this on your own – you’re not going to win. You need to SURRENDER. Let go and let God.” And that’s EXACTLY what I did.

At the scariest time in my life – facing death, I surrendered into the arms of God and experienced the most peaceful feeling in my life.

During my cardiac arrest – Dr. Dolich and his team worked on me diligently – putting in chest tubes while giving me more blood products and doing other medically necessary interventions. After twenty minutes of massive life sustaining measures, Dr. Dolich – looking at the picture now taped on my hospital room wall, which Dr. Esparza, the NICU doctor took minutes after Brian was born – refused to give up. Dr. Dolich and his team doubled their efforts.

After forty minutes, the respiratory therapist encouraged Dr. Dolich to keep going. She told him – “Doc– don’t stop! She has a GRIP on my hand!” Weeks later, I would learn that the name of that respiratory therapist – is Angel.

The trauma team’s efforts worked – after a forty five minute cardiac arrest – the team miraculously got a heartbeat.

I was then rushed to the OR where Dr. Dolich and his team opened me up for surgery and saw that my spleen had ruptured and my uterus was still bleeding twelve days post my C-section.

Between getting my spleen and uterus removed, I was in surgery for 4 hours. Dr. Dolich and team removed my spleen followed up by UC Irvine’s OB-GYN surgical team to remove my uterus. I had an additional SIXTY units of blood during my code blue and my two surgeries.

Undetectable by any medical scans, my vascular syndrome was tucked in the nucleus of my spleen and uterus – causing my internal bleeding.

Readers; – it took over TWO HUNDRED blood donors to save my life!

And here’s a sobering fact.

Any one of us could have the best doctors, in the best hospital, with the best insurance money can buy…and if there isn’t enough blood available. You’re dead. And guess what?

In addition to saving my life –

Those donors saved my husband’s life.

Our son’s life.

My parent’s life.

My brother and sister’s life.

My friends lives….from a life long journey of grief and heartbreak.

Like the butterfly effect – saving one life – rescues many lives.

So today I write this blog advocating for the 4.5 million of Americans who will need a blood transfusion THIS Year. I urge you to please donate blood if you can. If you are unable to donate (like me), then share my story and encourage others to donate blood. Financial donations are a way to support this cause too. Bring awareness to nurses and people who want to volunteer that blood donation centers are short staffed. It will take thousands of workers and donors to end this systemic problem that we are in complete control of solving.

Where there is blood, there is life.

Be a giver of life.