Carrie Mettler - A Wonderful Athlete with BAV

Carrie with her husband, Vic

A Wonderful Athlete

During her school years Carrie Mettler was a wonderful athlete. She and her classmates would all have been amazed if they had been told then that Carrie had a condition that would one day threaten her life. Carrie had been born with bicuspid aortic valve disease (BAVD), which is often far from obvious. On the contrary, many of those who have it seem to be models of health and fitness, and in many ways they are. But that picture of health can be dangerously deceptive.

Professional Fire Fighter Training

After graduation Carrie continued her active lifestyle, including running, cycling, skiing, backpacking, and skydiving! Carrie had always dreamed of being a professional firefighter. So at the age of 27, while working as an international customer service representative for a major airfreight company, she joined the Foster City Volunteer Fire Department.  She became a certified EMT during that time, while also holding down her full time airline job.

Carrie had lots of energy and was doing what she loved. A typical day found her working eight hours at the airline, then heading to the fire station where she sometimes remained all night, returning to the airport the next morning.  She was also on the Airport Safety Committee at San Francisco Airport and always found time to fit in her workouts.

Something is Terribly Wrong

Carrie describes this as a very special time in her life. "Everything seemed to be going my way.  After passing written tests, physical agility tests and panel interviews, I was on three different cities' lists to be hired as a full time fire fighter. But then, one day out of the blue, I passed out."

Looking at her, it was hard to believe that anything could be seriously wrong. But this first incident was just the beginning. "These fainting episodes started happening more frequently," Carrie remembers, "usually starting with a feeling of impending doom.  I went through a battery of tests.  But none of them could explain my fainting spells… until one day…I felt as if I was going to die.  I kept passing out and yelled to my roommate.  'Lauren, I think I am going to die.'  I will never forget her face…it was sheet white.  She and her boyfriend took me to the emergency room where they found my pulse at 16 beats per minute.  Once I was given medication to increase my heart rate I was admitted to the CCU for observation.  That evening I felt that terrible feeling again…but even before I could reach for the button to call the nurse they were running into my room with a crash cart.  Being an EMT….I knew something was seriously wrong…then I passed out.  When I came to I was told that my heart had stopped beating for 10 seconds.  The diagnosis was sinus node dysfunction." Carrie received her first pacemaker then, ending her dream of becoming a fire fighter. She was 29 years old.

Carrie, Theresa, and Bicuspid Aortic Valve Disease

A few years later Carrie met and married her husband, moving from the Bay Area to his hometown further inland. She became interested in cardiology and began working in the business office of the practice where she was a "heart" patient.  After taking classes on EKG interpretation she went on to become a cardiology technician.  Then the pacemaker technician job opened up, and Carrie was sent for training. Here she found what she was meant to do. Having a pacemaker in her own chest gave her great empathy for others. It was comforting and encouraging for patients to know that Carrie truly understood. Eventually Carrie was recruited to work for a leading pacemaker company.

One day, Carrie's youngest sister, Theresa, called to say that she had been having heart palpitations. Given Carrie's heart history, a number of tests were done on Theresa also.  They found that Theresa had a bicuspid aortic valve and an aneurysm of the ascending aorta.  Theresa had surgery in the summer of 2000 at the age of 36.  Her aneurysm had quickly ballooned to about 6.0cm.   She received a mechanical valve fitted into a Dacron conduit, replacing both her failed bicuspid aortic valve and dilated aorta.  Subsequently Theresa developed heart block, and she too was given a pacemaker.

Carrie already knew that she had a bicuspid aortic valve, and because of Theresa's aneurysm it was decided to check her aorta also.  There it was….bulging right at the same place as Theresa's.  Carrie's aorta was not as big as her sister's and has remained stable to this day.  But after all she had experienced, including frequent bouts of pericarditis, Carrie and her husband decided that she would retire from a very demanding career and work from home on their Internet Service Provider business.  Stress is known to raise blood pressure and high blood pressure can be lethal when there is a weak artery.

In Search of an Aortic Surgeon and BAVD Expertise

Carrie and Arlys

During one of her office visits in 2002, Carrie's cardiologist showed her an article that he had read in an AHA journal, "Clinical and Pathophysiological Implications of a Bicuspid Aortic Valve".  Even though her aorta was "borderline" in size, her cardiologist suggested a consult with an aortic surgeon, especially since Theresa had already had surgery. Carrie describes what happened next. "I went to a major medical center to be evaluated at their Marfan's clinic, where surgeons specialize in aortic aneurysms.  I did not meet the criteria for Marfan's and actually felt like they wondered why I was there. Lucky for me, prior to this consultation I posted a question on a forum to a group of 'heart specialists', noting the article mentioned above, explaining my history, and asking what they thought of all of this. There was a prompt but conservative answer, and  'Good Luck'. But the most important thing that came from that post was a comment posted by a woman whose husband had already had surgeries for both his bicuspid aortic valve and his ascending aortic aneurysm. She had searched for the article I mentioned, was unable to find it on the web, and was wondering if I could share it with her. This was the beginning of a most treasured friendship."
When Carrie met Arlys Velebir through that BAVD paper in the medical literature, neither of them knew that someday they would find themselves together on the Board of Directors of the Bicuspid Aortic Foundation. The Foundation was in its embryonic stage already; that was the year it began. They did know that day in 2002 that there was very little information about bicuspid aortic valve disease, that it could be life threatening, and that it was important to find expertise. Having only spoken with Arlys on the phone, Carrie traveled to southern California and together they went to Carrie's consultation with Dr. Sharo Raissi, the aortic surgeon who cared for Arlys' husband. For the first time, Carrie got the answers she needed about bicuspid aortic valve disease and her aorta. As Carrie remembers that time, " I have to say that to those I told about flying to meet a woman I had never met in person, staying at her home, and making an appointment with a heart surgeon that she so highly recommended, it sounded at the very least….bizarre!  But this was one of those times…. I knew in my gut, this was the right thing to do.  Everything went without a hitch!  And she was right, this surgeon was the one for me. If and when I need surgery, Dr. Raissi is the one."

Something is Terribly Wrong Again

During the summer of 2003, Carrie developed a ringing in her right ear and started having "funny spells".  She would feel like she might pass out, and then get a strange déjà vu type aura.  Her heart and pacemaker were checked to make sure all was in order, and everything was fine. Around this time, Arlys brought a paper in the medical literature to Carrie's attention. This paper indicated that BAVD also is associated with cerebral aneurysms.  In November of that year Carrie actually lost consciousness. With her local doctor out of town, Carrie went to see the Nurse Practitioner about this most recent frightening episode. She agreed to order a head CT. Carrie forwarded this test to Dr. Raissi in Los Angeles, who asked his neurosurgeon colleague to review it. This neurosurgeon, 

Dr. Wouter Schievink, was the author of the paper on BAVD and cerebral aneurysms!  The test done locally seemed to show that all was normal, but the specialists in LA were not satisfied with it because the test was done without contrast. A test without contrast might detect bleeding, but an aneurysm will not show up. Carrie needed another test, this time with contrast, to check for aneurysms in her brain.

"You Have an Aneurysm Behind Your Left Eye"

Carrie with Dr. Wouter Schievink

Some days are forever seared in the memory; they can never be forgotten. The day Carrie flew to LA to be screened for a brain aneurysm is one of them.  It was a beautiful December morning in LA, sunny and clear, when Arlys met Carrie at LAX.  First on the agenda that day was a CT angio of Carrie's brain, where an intravenous contrast agent would give a clear view of the blood vessels in her head.  Next was an appointment with a neurologist. Due to a power failure there was a delay in getting Carrie's final CT results, but preliminary indications from the neurologist were that all appeared normal.  Carrie's last appointment that day was with the neurosurgeon, Dr. Schievink. Was it really so necessary to see a neurosurgeon after all? But Arlys said, "You are here, and you need to see him."  The experience Arlys and her husband had the year before with his aortic aneurysm was still very fresh. Until they found Dr. Raissi, they did not get the answers they needed. Arlys wanted to be sure that surgical expertise would evaluate the blood vessels in Carrie's brain. At the very least, since Carrie had BAVD, she could explore the potential risks of developing brain aneurysms with this specialist.

Carrie had a return flight out of LAX that same evening, and as they waited to see Dr. Schievink, Arlys and Carrie were thinking it might be tight getting to the airport on time in rush hour traffic. Then the doctor walked in. Carrie says, "I really didn't anticipate the news I was about to receive when the neurosurgeon came in and said, 'YOU HAVE AN ANEURYSM BEHIND YOUR LEFT EYE'.  It was surreal.  I just crumbled…and started to cry…. Surely you must have the wrong patient. But Dr. Schievink had questioned and double-checked the results himself before I had even seen him. It was me, and now I knew I had an aneurysm in my brain as well as my chest." Dr. Schievink held Carrie's hand as he gently told her it was safe for her to fly home that night, that he would reconfirm the findings himself, and call her soon about her treatment plan.

This was exactly one week before Christmas.  Not wanting to worry her family needlessly, Carrie had only told Theresa about this visit to LA. She asked Theresa not to say anything until she spoke to the neurosurgeon again. The next day, Carrie's heart would sink each time the phone rang. Then the call came. Carrie did need surgery.  Although Carrie had lost her father earlier in 2002, she has her Mom, another sister between herself and Theresa in age, and an older brother. Theresa  told them all that Carrie would be having brain surgery soon.

Carrie didn't waste any time.  Surgery was scheduled for January 14, 2004.  Theresa flew out from her home in the Midwest, and Carrie's husband drove them to LA the day prior to surgery.  Carrie's dear friend from northern California came down, and Arlys met them at the hospital early on the morning of surgery.  Carrie's procedure was the second one of the day.  There was a long wait; the first case took longer than planned. Finally Carrie's name was called.

During Carrie's surgery, a clip was placed at the base of her "berry" aneurysm. Carrie says, "I remember my first waking moment…thanking God.  Once I was able to understand…my neurosurgeon spoke with me and told me he found another aneurysm behind the one they knew about."  Yes, Dr. Schievink also took care of another small aneurysm that had been there, too small for the CT scan to detect.

Theresa with Carrie

Today, Carrie speaks of how lucky she is. Lucky…?  Yes, Carrie says that is the only way to feel. Because she has seen the pictures taken during surgery, and she knows how very thin the walls of the aneurysms were.  She knows that without surgery, it was just a matter of time before something would have happened in her brain. In the end, it seems her original symptoms were not related to the aneurysms, but those symptoms prompted the investigation that found them and saved her life.

What is life like for Carrie now? "Frequent echocardiograms and CT scans are part of my care.  For the most part I try not to worry about my BAVD…but I do admit feeling anxious every time a test is done…just hoping there are no changes. Today I continue to stay active. My husband and I enjoy country living amongst the grapevines and cherry trees with our dog, Monty, and our cats. We both have overcome some pretty big obstacles but we still appreciate life and make the most of it…enjoying the little things and taking it day by day."
                                                                                                                                                                               

Carrie's Mom

Carrie's family has had yet another member afflicted by aortic disease. Her Mother was diagnosed with an ascending aortic aneurysm.

The Foundation is in touch with other BAV families who also have members with brain aneurysms. As with many aspects of BAV, much more data and research are needed to understand this more fully. But as Carrie knows so well, it is best to look inside and either rule out or find an aneurysm, in both the head and the chest. It must be high-quality diagnostic testing evaluated by experts, though. Had Carrie accepted the test results done locally, a very different story might be told here now.

Screening for aneurysms in Carrie's brain and the subsequent surgery saved her life in 2004. Ongoing monitoring is important to keep her safe. Carrie is sharing a precious, costly gift, her own experience, with others through the Bicuspid Aortic Foundation. She is sharing her life, hoping to save lives.

2016 Update from Carrie

Carrie's story continues here, Carrie in 2016 - Seeking Opinions for A Complex Situation

Carrie in 2016 - Seeking Opinions for a Complex Situation

Carrie Running with Shadow and Stella
Spring 2014

For many with BAV, years may go by with seemingly little or no change. But at some point, it is realized that something was indeed changing inside. It was just that no one, not that person, not their doctors, could detect it. Until one day, whatever was happening can finally be seen. And so it has been for Carrie Mettler.

Carrie in 2014

Carrie first shared her BAV journey with the world here, Carrie Mettler - A Wonderful Athlete with BAV . Beginning with her athletic high school days, through the implantation of a pacemaker in her late 20's, discovery of her BAV and aortic aneurysm, and then her brain aneurysm in late 2003, we read of her amazing triumphs. For the next 10 years after her brain aneurysm surgery in early 2004, Carrie faithfully kept her follow up appointments.  And then it was 2014.

Time for a New Pacemaker

In 2014 Carrie needed to have her pacemaker replaced.  It was decided at that time to upgrade from a single chamber device to a dual chamber model.  They moved the pacemaker from the right side to the left side of her chest, then added two new leads, cutting and capping the old atrial lead.

Carrie tried to resume her normal activity and had difficulty exercising.  It then became difficult for her to even lie flat or bend over.  She felt as if she was being held upside down.  There was obvious neck vein distension along with some facial swelling.  Carrie was sent for a cardiac catheterization, where it was determined that her Superior Vena Cava (SVC) was almost completely blocked.

Carrie Proudly Displaying Ribbons at a Splash Dogs Event
A bulging vein on the left side of her neck is clearly visible.

Carrie underwent surgery to reconstruct her SVC along with the right atrium.  Carrie did remarkably well and was active just 3 weeks post op, walking long distances with her dogs and then running once again a short time later. 

Carrie's Aortic Aneurysm

Then it was time for her next aortic checkup, a routine echocardiogram.  The echo indicted that her aortic aneurysm had enlarged.  Why now, after so many years of being stable? Changes in aortic aneurysms can be unpredictable, which is why it is so important to faithfully keep imaging appointments. 

Could it be due to the increased blood flow after her SVC was repaired?  The surgeon said that the thrombosis and scarring on the lead had been  blocking blood flow for some time. Adding the additional leads caused near complete blockage, giving her the symptoms of Superior Vena Cava Syndrome.  Once this was repaired the blood flow is likely more forceful.

After many years of low blood pressure, Carrie has also had bouts of high blood pressure that have been difficult to control with medication. Could this high pressure also be contributing to a dilating aorta?

Carrie has had some episodes of chest, back and neck discomfort with and without exertion. It is very important to understand what is happening inside.

Carrie in 2016

Carrie, outwardly glowing with health and vitality, is very complex inside. With the encouragement of doctors who have followed her through the years, she is now arranging review of her records by physicians at the Cleveland Clinic. 

Thank you, dear Carrie,

 for sharing your journey with us.

Here at the Bicuspid Aortic Foundation,

 we promise to share each step with you,

 and surround you with a Climate of Hope.

- Arlys Velebir

                         Bicuspid Aortic Foundation

BAV Lifelong Care - Carrie Mettler's Journey - 2016 to 2021

May 2021 - Life is good!

Background - Carrie's BAV Discovered in Early 1990's

Carrie was born with BAV, but she did not know this until she volunteered to be a guinea pig for a new echocardiogram machine in the early 1990's. There it was - a two-leaflet aortic valve! The next year, after her sister's diagnosis included not just BAV but an ascending aortic aneurysm, Carrie had another echo which showed that her ascending aorta was enlarged also.  

Carrie already had begun her heart journey with the implantation of her first pacemaker in 1989, when she was only 29 years old. In the following years, her pacemaker journey alone has required multiple interventions due to infection, broken pacing leads, and device upgrades. In 2014, open heart surgery was required to address complications caused by pacemaker leads! Carrie had developed Superior Vena Cava (SVC) syndrome, which is obstruction of the blood flow though the superior vena cava. The cause was old pacemaker leads located there and scarring that had developed in this blood vessel over time. During surgery, Carrie's own pericardial tissue was used to enlarge her right atrium and patch her superior vena cava, and the abandoned pacemaker leads were removed.

Here, we focus especially on the most recent five years of Carrie's journey, from 2016 to the present. Carrie began experiencing chest pain/discomfort that year, causing her to seek out the expertise of the Cleveland Clinic. The remainder of this post are are in Carrie's voice, with paragraph captions added.

October 28, 2016 - Chest Pain Prompts a Visit to Cleveland

So off I went for evaluation at Cleveland Clinic.  I flew to Chicago where my little sister, Theresa, picked me up.  We then took an all-day road trip to Ohio.  We spent several days there.  I had an echocardiogram, a CT, labs and EKG.  Once all the tests were completed we met with a cardiologist as well as Dr. Eric Roselli, a cardiothoracic surgeon.  Dr. Roselli viewed the CT result with us, where we were able to view the actual scan.  My aorta was stable and they all felt that it was reasonable for me to continue on with the watch and wait approach.  The chest pain issue was still unsolved so I just had to back off on my running and switch to walking.

 So, over the next several years I kept up to date with my local cardiologist, where serial imaging of my aorta and bicuspid aortic valve remained relatively stable.  Chest discomfort remains unsolved.

March 2019 - Diving Competition, Bee Sting and  Breast Cancer

During a dock diving competition where my little dachshund was competing I was stung by a bee on my left wrist.  Initially the sting was painful but I continued on with the day just feeling tired.  Then I developed a large localized reaction which spread up past my elbow.  After seeing my primary care provider he instructed me that if the redness continued going up my arm that I should go to the ER.  I did end up going to the Emergency Room where I was given appropriate medications and steroids.  The “cellulitis” finally resolved.  It was also deemed that I am allergic to bee venom.

Bee sting reaction!

But something wasn’t right.  I just kept feeling like I had an ache in my left armpit area for a while…then I started feeling pain in my left breast. 

I was watching a nightly national news program one evening and they aired a segment about women with fibrous breast tissue should be screened with 3D mammography.  After seeing this and knowing my mother passed away after a battle with metastatic triple negative breast cancer…I called my PCP and asked if he would order this mammogram for me. 

 I went in for the mammogram the end of April.  The next day my doctor’s office called to tell me that I had a suspicious lesion in my left breast and that I will be scheduled for an ultrasound.   After the ultrasound my PCP called me to let me know I needed to have a biopsy. 

The biopsy was done on May 2^nd.  Four days later, I got the call…You have cancer!  My knees buckled and I felt sick and so frightened.  I got my wits together and went out to where my husband was working in our yard.  It was all so surreal.  Right up there with when I found out I had a brain aneurysm.  All of the results came back, and I indeed had the same cancer that my mother had.  Triple negative breast cancer.

Cancer Surgery and Chemo

There were many appointments and consultations, then finally I had surgery to remove both breasts June 24, 2019.  I spent a few days in the hospital and had the support of my husband, Vic, my sister Theresa and several of my dearest friends.  I actually felt pretty well and was optimistic as no cancer was found in my lymph nodes and the tumor wasn’t too large.  But it was still considered a high grade tumor and I had to be scheduled for 16 weeks of chemotherapy.   Prior to this I had to have a pre-chemo echo…where everything appeared stable.

After discussing everything with my oncologist and surgeon they agreed that I could take the RV trip we planned to our favorite park on the Metolius River in Oregon.  I was very grateful for this time to reflect and be with my husband and my sister by heart, Judi and her husband Greg.  We were also joined by two more dear friends one of which was a retired nurse.  I was in good hands and I felt the trip to be restorative.  

January 2020 - Last chemo treatment

August 5^th 2019     I received my first round of chemo.  Judi was with me for every infusion from then on.  I developed most of the nasty side effects.  Anemia, neutropenia, oral thrush, nausea and hair loss.  We had to postpone several treatments until my labs rebounded.  I also had to have several blood transfusions. 

I was pretty much exhausted most of the time but pushed myself to walk my dogs as much as possible.    In October I had another echo, and my cardiologist told my aortic valve was now mildly stenotic.  Fast forward to December and the aortic valve showed moderate stenosis.  I became more fatigued and short of breath and even after chemo ended in January of 2020 I still could not regain my stamina.  My cardiologist recommend that I work out but I could barely climb a flight of stairs.

 March 2020 - COVID, Fatigue, BAV Severe Stenosis, A New Door Opens!

The Covid 19 Pandemic lock down started.  I was supposed to have the tissue expanders removed and proceed with breast reconstructive surgery.  This procedure was deemed elective and my case was cancelled indefinitely.  I still felt short of breath, and fatigued along with exertional chest discomfort.  Not to mention how uncomfortable the tissue expanders were. Then in May my cardiologist ordered another echo.  My aortic valve stenosis was now severe.  I had mild swelling of my ankles and was becoming depressed and very frustrated. 

One day in August, my husband and I were driving down our road and stopped in to see our relatives that were out in their yard.  This was one of those divine intervention moments.   You see, this family member also has severe aortic stenosis!  Two of us, living on the same road, with the same problem. We talked for a while, and she told me that she had become discouraged with her local cardiologists and finally went to UC Davis in Sacramento, where she felt she receives superior attention.  I told her that I was also frustrated with my care and that my cardiologist of many years was set to retire.  I asked her to get me some contact information the next time she went.  A few days later she stopped by with the TAVR (Transcatheter Aortic Valve Replacement) Nurse coordinator’s card and said “she knows you”!  I looked at the name on the card and couldn’t believe that it was someone I used to work with in a cardiology office where I worked for many years.  She actually helped train me in pacemaker and ICD follow up….and we even had golfed together!  She was expecting my call!  I felt so relieved and thankful! 

 September 1^st 2020 - BAV Needs Replacing, Stable Aorta

Carrie's aorta 
2016 at Cleveland Clinic

Judi picked me up and off we went to UC Davis, where I had another echo and was evaluated by the cardiologist specializing in TAVR. I was also evaluated by a cardiothoracic surgeon and many medical students.

They all agreed that my aortic valve needed to be replaced, but they needed more time to go over the echocardiogram results and the recent CT scan.  Because I had previous open heart surgery for SVC syndrome and also have an ascending aortic aneurysm, I was considered high risk.

I felt very comfortable and confident in my new care team, knowing they would take time to make a treatment plan. Two days later I received a call from the TAVR nurse.  They determined that I was a candidate for TAVR and that my aorta was considered stable. 

 October 5, 2020 - TAVR in Native BAV

I had a transcatheter aortic valve replacement (TAVR) using an Edwards Lifesciences Bovine valve.  Everything went very well and I felt the difference immediately!  My physicians are optimistic that with my new valve, some of the pressure will be taken off of my ascending aorta.  We will continue to monitor my prosthetic valve along with my aneurysm. 

June 2021 - Blessed in the Face of Adversity

Today, I feel very well!  I was finally able to have my breast reconstructive surgery… also at UC Davis.  In fact, I have transferred all of my care to UCD.  My care has been amazing!  Yes the past few years have been a challenge…as they have for all…but again, I would not change a thing.

Feeling blessed in the face of adversity is truly a gift…and I will always be thankful for the bee and the cow that helped save my life! 

Carrie has been with us at BAF since our beginning days,

 and it is our privilege to walk with her always. 

Thank you, Carrie,

 for once again sharing your courage and strength with the world,

and through each experience,

 Creating a Climate of Hope

~Arlys Velebir

                    Bicuspid Aortic Foundation

Also see Carrie Mettler - A Wonderful Athlete with BAV   and 

Carrie in 2016 - Seeking Opinions for a Complex Situation

My Love Will Find You - Families with Bicuspid Aortic Valve

This is for everyone who loves someone with Bicuspid Aortic Valve or any form of aortic disease in the chest.

Derek Owens' parents were told about his BAV at birth
He was 16 when he first had surgery

This is especially for Mothers. Mothers of all ages.  Right from the start, they know how special, how talented their child is. At some point, they may learn there is something not quite right inside the heart of their beautiful child. They agonize through the doctor visits, the surgeries. Some Mothers hear those most dreadful words. Their beloved child is gone. Rest assured, there is nothing you could have done to prevent a bicuspid aortic valve. Above all, you give your child what no physician ever can. You give them your love. It is the most wonderful treatment in the world, and you can increase the dose at any time without harm. Yes, it is the greatest healer there is. Your love. Unlimited. Always.

Following are the words of a childrens' book by Nancy Tillman. The pictures are from BAV families.

Wherever You Are, My Love Will Find You

By Nancy Tillman

I wanted you more

 than you ever will know,

 so I sent love to follow

 wherever you go.

It's high as you wish it. It’s quick as an elf.

You'll never outgrow it... 

it stretches itself!

So climb any mountain...

BJ Sanders at Machu Pich

climb up to the sky!

My love will find you.

BJ's dear Mother, who lovingly
follows her daughter's adventures

My love can fly!

BJ celebrating her birthday in 2014. She had surgery a year earlier.

Make a big splash! Go out on a limb!

My love will find you. My love can swim!

Scott Nichols (in blue) was lost to aortic dissection, January 2014

It never gets lost, never fades, never ends...

if you're working...

or playing...

or sitting with friends.

You can dance 'til you're dizzy...

paint 'til you're blue...

There's no place, not one,

that my love can't find you.

Derek Owens has always loved basketball!

And if someday you're lonely,

or someday you're sad,

or strike out at baseball,

or think you've been bad...

just lift up your face, 

Derek in high school

feel the wind in your hair.

Derek Owens and his Mom, Laura

That's me, my sweet baby, my love is right there.

Chuck Doherty lost his life in April 2012
 due to BAV complications

In the green of the grass... in the smell of the sea...

in the clouds floating by... at the top of a tree...

in the sound crickets make at the end of the day...

“You are loved. You are loved. You are loved,” they all say.

Carrie Mettler running a half marathon

Carrie Mettler's beloved Mother, who knew the reality of
having two daughters with BAV

My love is so high, and so wide and

 so deep, it's always right there, even

 when you're asleep.

So hold your head high

 and don't be afraid

Bob Gies following his surgery in 2010.

to march to the front

 of your own parade.

Doug Grieshop on his wedding day 

Doug Grieshop at 2 months

If you're still my small babe

 or you're all grown,

my promise to you

 is you're never alone.

Doug had an undiagnosed BAV. He lost his life to aortic aneurysm
 rupture 10 years ago, on September 20, 2004.

You are my angel, my darling,

 my star... 

and my love will find you

wherever you are.

You are loved.