Each year at the Brianna Marie Foundation 5K we honor all babies that have passed from our earth to soon with a butterfly release. Over the past ten years we have met wonderful families that celebrate and honor their child with us at the event. We would like you to meet some of these families and understand from them what this event means to their friends and families.
Meet the McGuire Family
Honoring Brendan McGuire
In 2008, my husband, Geoff and myself were so excited to be starting our family and building our first home. It was all working out that we would be moving into our new home a couple of months before our son would arrive. In typical Florida fashion, we ended up having a storm come through that dumped tons of rain and our new home that we were building had a window left open. The walls were damaged and delayed us moving in. We decided that we would not buy too much as we didn’t want to move stuff twice so I delayed buying most of our new baby supplies and furniture. At 32 weeks I went in for what would be a routine ultrasound to check the status of the baby. It was recommended that we go and get a higher level ultrasound because they saw that he was not growing the way that we had hoped. Instead of going to our newborn parent class, we immediately did what was recommended and I was admitted to Winnie Palmer Hospital. They found that our baby Brendan had hydrops and a diaphragmatic hernia. I spent a week at Winnie Palmer for them to do more tests. It was decided the best thing to do would be to deliver him to help remove some of the fluids and really get a picture of what was going on. On October 22nd , 2008 in the very early morning hours we delivered our baby. After many different tests it was determined that there were a few other things developmentally wrong. So on October 24th we decided to remove his life support and our sweet child passed away in our loving arms. The same day he passed was the day we had to close on our brand new home and move in as our lease on our apartment was going to be up at the end of the month. We had lots of support from our family and friends who helped us settle into our new home, but unfortunately without our son. Everyone did what they could to help us and what they thought was right, but there was always something missing. There was a void that just didn’t seem to be filled.
A couple of years later, my husband was working at Pinch A Penny, and a woman walked in with a flyer about a new foundation and a 5K race to support fetal medicine. My husband came home and said he thought this was something we should look into as it was very near and dear to our hearts. We decided to sign up for the race to see what it was all about. After the first race, I had a feeling of belonging like I had never had. There was a small group of people, even though we didn’t talk or know each other, who had gone through something similar to me. We just knew we needed to continue to be a part of this so the following year we created a team, team Brendan. Our team was a small group of friends who knew about our journey and were there the whole way to support us during that difficult time in our lives. They gladly joined our team to help us celebrate the life of our baby Brendan. Year after year, more friends joined and I became more comfortable telling my story and allowing people to join my journey. I felt as though it was ok to talk about my son who had passed and that people wanted to hear about him. I no longer felt shame and sadness, but joy in being able to remember his life with my friends and family. Now we are one of the top contenders every year for largest team and fastest team thanks to an amazing group of friends and family who support me every year.
Meet the Kaiser Family
Honoring Izabel Grace Kaiser
Everything was going along pretty smoothly. I had some morning sickness, (more than the boys but not unbearable) I was still able to run, and I wasn’t gaining TOO much weight. It was an exciting time as we were preparing for our wedding and now expecting! One week prior to our wedding, Monday September 10th, is a day we will NEVER, EVER forget. We had our first visit with the perinatologist. My OB told me that due to having previous high risk pregnancies, and because of my age, I should see a specialist. At our specialist appointment, we heard things about our baby that we would never forget. The doctor came in to review our sonogram. He stated, “he needed to look some more” and told us, “there is something wrong with your baby….something very very wrong.” At that time, the specialist encouraged us to do an amniocentesis to see what the problems might be in our little one. He informed us that the baby had hydrops (a condition where fluid is inside the baby in 2 or more critical areas). Hydrops is a deadly diagnosis most of the time, and is also a symptom that something else is wrong. We proceeded to do the amniocentesis and blood tests to rule out anemia in our tiny child. I was somewhere between 14-15 weeks at this time. He encouraged us to come back on Thursday of that week so that he could look again at our baby and hoped to have results back on the tests. But the test results, and many other doctor visits later, proved inconclusive. We waited and prayed through many weeks of uncertainty.
I got the pleasure of carrying Miss Izabel Grace Kaiser until 11-28-12 when she was delivered via c-section. I was 27 weeks along when her heart rate tones became very erratic. I knew that something wasn’t right! I called my OB and he told me to immediately go to the hospital to be monitored. Within about 45 minutes from arrival at the hospital, we were informed by our maternal fetal doctors that we needed to deliver her if we wanted to ‘spend some time’ with our dear daughter. I knew what this meant, and I wasn’t ready to say hello and most likely good bye that day. Our Izzie was severely hydropic at birth. She had fluid in her belly, surrounding her lungs, and under her scalp. The fluid was so severe it damaged the skin on her legs. Our tests came back normal, and, ultimately they couldn’t find an airway to be able to help her breath, so she passed away. Izzie was with us for about 15-20 minutes and then grew her angel wings. We spent a few hours with her after her birth holding her and looking at her. She was beautiful and had none of the ‘oddities’ that doctors thought she would.
Julie Coleman-Kaiser (Mom)
Meet the Farrell Family
Honoring Harley Farrell
Harley Ferrell We were diagnosed at 17weeks with stage 4 TTTS in Miami Fl She made it to 30 weeks was born 3lbs she was also diagnosed with pulmonary atresia and Left side hypoplastic heart. She lived 47 days in nicu at Jackson memorial until she passed away from organ failure due to her heart problem.
Danielle Farrell (Mom)
Meet the Byrd Family
Honoring Kaia Lovejoy Byrd
We found out our sweet girl was on the way just a month after getting married & life seemed to be coming together as we had always dreamed. Kaia was the epitome of our dream.
At twenty weeks we went in for our anatomy scan and found out Kaia had issues with her kidneys and they seemed to think with her heart too. They said to come back in four weeks to do another scan. Each second of these four weeks were the most fearful moments of our lives. Immediately God delivered angels in our lives to get us in the right hands. That angel was Aran Cote Hissam and her angel Brianna, who immediately used her connections and knowledge to get us into the Children’s Hospital in Cincinnati where they were able to rule out heart defects and diagnose her with “renal abnormalities”. Kaia had a large cyst on each kidney but to this day it is still an anomaly.
God gave us the best team and immediate peace to know we could trust our daughter’s life in their hands. Each week we would sit around a board of fetal surgeons and specialist who would give us our plan of action for the week. So many sat before us, so many sat behind us… Kaia’s warriors were strong and they kept heaven roaring with pleas over her life. After each meeting with our team came news of more surgeries.
We had a total of four procedures done while pregnant and one right after Kaia’s birth which included fetal shunts and amnioinfusions. We stayed at University of Cincinnati for over 3 months on bed rest working with our medical team tirelessly to give our girl the best shot possible. Aran and Brianna’s love and support helped carry us through and keep our hearts strong. I was induced at 37 weeks and gave birth to Kaia Lovejoy Byrd on March 3rd, 2018 . To be able to put a face to the fight was everything but the real battle had just begun. Now our baby had to fight on her own and I couldn’t do it for her anymore. Kaia fought for seven hours. She was the perfection of an angel. We were in total shock to find our her lungs had not fully developed due to lack of amniotic fluid despite the steroids and amnioinfusions and because of that Kaia passed in my arms at 1:02 am on March 4th, 2018. We have been so blessed by Aran and her fight that she carries on. Her and Brianna have a special place in our soul as they have walked with us in our darkest hours. The Brianna Marie Foundation continues to help in this fight for fetal research and to help families like us and for that I am forever grateful.
Kaia now has two younger sisters, Lennon (2) and Nori (4 months). We look forward to the day are family is together in full.
Meet the Deer/Diabo Family
Honoring Emma Lynn Ionkwe’tison Diablo
On October 7 I woke up just like any other day to get the kids ready for school and get myself ready for work but as I was trying to eat my breakfast I noticed that part of my face felt like I just came back from the dentist, it felt numb. I was a little worried but I couldn’t call my mom because she was very ill will cancer and was in the hospital. I called my mother in law and she suggested I get it checked. I called the hospital and was advised to go the the maternity ward to see if everything was ok? Not long after I was there I knew something was wrong because they kept me on the fetal monitor.
I called my husband to come to the hospital. They decided to give me my ultrasound right away since I was scheduled to have it the following week. Prior to this pregnancy I never had any issues with my other pregnancies, I always delivered naturally and had perfectly healthy babies. My husband and I did not have any health issues so I never imagined anything was wrong. Besides that I was told at my 20 week ultrasound that our baby was perfect. During my ultrasound it became quite obvious that there was something very wrong real fast. I was told very bluntly that it appeared that my daughter had a condition called Fetal Hydrops and that she wasn’t going to make it. I had to deliver her that day because my own health was at risk.
Within minutes an ambulance was called and I was being rushed to another hospital. At that point I had no idea what fetal Hydrops was or what to expect was going to happen to me or my baby? Once at the second hospital the doctor went over everything and gave me medication that would induce my labour. The medication was fast acting but it came with very harsh side effects. It gave me flu like symptoms, fever, etc. They put a fetal monitor on me again, and I asked why I had to wear that? I was so upset and still couldn’t comprehend what was happening to me and they wanted me to listen to my baby until her heart stopped beating??? I couldn’t do it. I asked the nurse to take it off of me.
At that point my husband got me a private room because there was no way I could go through this process in a room with 5 other women divided only by hospital curtains. When it came time to deliver, my sister left the room so I could go through this alone with my husband as we were extremely emotional. Apparently we were in a teaching hospital, so once news spread in the hospital that a Fetal Hydrops baby was about to be born all the students came rushing into my room. It was so overwhelming and very frustrating. Once she was born her heart was no longer beating. I kept her with me for a few hours, just laying there holding her, wishing I could of had just a few moments with her, to see her beautiful eyes or to feel her little breaths or just tell her that I love her. I was discharged from the hospital only to be called the next morning being told to get to my pharmacy immediately to pick up a prescription. The numbness in my face was Bell Palsy, the facial numbness/paralysis which would become permanent if I didn’t get the medication ASAP. To this day we still have no idea why this happened?
While trying to figure out what Fetal Hydrops was I came across the Brianna Marie Foundation. I was immediately drawn to the Foundation and Brianna’s story. Knowing that I was not alone gave me comfort. Learning that what happened to my daughter wasn’t my fault gave me some peace because I was driving myself crazy wondering. My family and participated in the walk in 2013 and held various fundraisers. My other daughters did various projects on Fetal Hydrops in school which I think was their way of finding some peace with the loss of their sister. My family and I would like to thank Aran and her family for sharing their story, being there supporting all the families who are experiencing or have experienced the same loss and for all the research into Fetal Hydrops
Meet the Madison Family
Honoring Samuel Madison
My son, Samuel, was diagnosed with a cystic hygroma with non immune hydrops in March 2017 after a nuchal translucency scan. I went through extensive testing through the Fetal Care Center in Cincinnati, OH, all with normal results. After a long, hard battle, Samuel lost his fight on May 31, 2017 and was later born sleeping on June 2, 2017.
Meet the Hernandez Family
Our journey to parenthood has been a faithful one and we’d like to begin by saying that our God is always good and never makes mistakes. We were blessed with our first miracle in 2013, after an uneventful and joyous pregnancy. Our first son, too eager to join us, decided that he just could not wait to meet this world and made his unexpected arrival six weeks early. With his premature delivery came complications which left us with the news that conceiving again would be nearly impossible. As we always have done, we turned our questions and our hopes to the Lord for direction. After numerous corrective surgeries to repair the damage and much fervent prayer, we gave our hearts to the idea of adoption. With so much happiness and excitement, we tip-toed into the process. As God would have it, that very same week, He revealed His perfect timing and we learned that we were pregnant again with our second miracle, whom we would soon come to know as “jellybean.”
If there ever was a child who was so wanted and prayed for by so many, it was our sweet little jellybean. From the beginning, we learned that we were on a roller coaster speeding out of control with more unexpected twists and turns than we could have ever anticipated. Our first few weeks came with the advice to be “cautiously optimistic.” Jellybean’s earlier ultrasounds revealed levels and heartbeats which were not as strong as they could be. We were determined to be as faithful as possible and to find peace in knowing that God was going to do what He felt was best for this little life – and for ours. Thankfully, our blessing was allowed to grow; weeks turned into months and months turned into trimesters and this baby, who had already defied so many medical odds, was alive and thriving.
Navigating a “high-risk” pregnancy was one of the scariest blessings we would ever come to know. We faced hundreds of appointments, ultrasounds, nightly abdominal injections (to ward off blood clotting complications that cause miscarriage or stillbirth), trips to the pharmacy and thousands of miles driven and dollars spent. We battled countless attempts to find the courage to buy the crib we were dreaming of and ignore the idea that our nursery might remain empty. God had already shown us over and over that He was in control and that is where we found our peace. Eventually we were brave enough to get our very special crib, and we even decorated the nursery using beautifully framed prints of actual prayers sent by those we know (and some people we’d never even met!) who were casting blessings of health and safety over our new baby. It was our hope that the prayers which once helped to grow our baby in the womb, would continue to help grow our child in this world.
God gave us a mission by asking us to walk this type of pregnancy journey and we believed it was to make His Word known through each chapter of our baby’s story. So that is exactly what we did! We shared our faith with every nurse, tech, pharmacist, insurance representative and anyone else who would listen! Jellybean faced and overcame so many obstacles; many appointments were met with doctors who fell silent, questioning the newest concerns presenting at each scan. There was always something new to be worried about and with each new question came devastating fear and even more reason to turn to the Lord for strength. We met with specialists and surgeons from many fields who studied our baby and determined that jellybean’s conditions (primarily, esophageal atresia), though abnormal, were not life threatening and could be treated with surgery after birth. We were given hope, guidance, and a plan.
As the weeks progressed, jellybean threatened to come early many times and preventative measures were taken to ensure that our little one had the chance to grow as long as possible. Hospital stays were frequent and doctor appointments became daily. We were determined to do anything and everything possible to give our child a fighting chance. Sonograms revealed that severe Polyhydramninos (caused by jellybean’s inability to swallow amniotic fluid) would eventually result in labor which could not be stopped – and so we waited. After spending eight weeks managing contractions which were coming every few minutes, it was time and we were having a baby! We’d made it to 34 weeks which exceeded anyone’s expectations. With God’s help, we had done the very best we could and it was finally time to enjoy the excitement and meet this child who was so fearfully and wonderfully made.
On February 25, 2016, at 3:43 am, after a long and intense day and night of labor resulting in an emergency c-section, jellybean was born! While we waited to learn if we’d had a boy or girl, it was then that we saw him: Christian Michael Hernandez, 4 pounds, 4 ounces and 19.5 inches of pure miracle. He was perfect and pink and everything we hoped and prayed for. The NICU team who was on standby were treating him and all was going according to plan- until all of the sudden…it wasn’t. Seconds turned into minutes, and our baby boy never made a sound. Every single hero in the room with us worked as hard as they possibly could to save him, but it was determined that Christian’s trachea was not attached to his lungs and he was unable to receive oxygen. This was not visible on ultrasound and nothing we could have planned for. There was nothing that could be done, and in this moment, we were given the chance to hold our son and tell him how much we loved him and how very much we wanted him. We told him that he was everything we could have dreamed of. As his heartbeat began to weaken, it was our voices he heard last and the face of Jesus he saw first. We knew, right there in the operating room, with our son in our arms, that this was our final mission with Christian on earth. In these moments, instead of screams of anger and hurt, we chose to profess unconditional faithfulness in our Lord and Savior and testify out loud, for all those who could hear us, that our God is always good, no matter what He was asking us to endure.
Despite facing the worst possible pain a parent can be asked to survive, we knew immediately that though Christian’s life was small, it was so very mighty. His death would not be in vain. Christian had the opportunity to impact hundreds of lives along his journey to birth and continues to do so still. In the days following Christian’s passing, we were told that his story, and our decision to continue to praise God despite our suffering, was a “light in this world.” We knew then that our mission and God’s purpose for our son had become greater than we ever expected. While his nursery did end up remaining empty, our lives gained a full and worthy purpose. Through Christian Michael Hernandez Foundation, and its Be the Light Project, we vow to honor our Lord and preserve our son’s memory by being a light unto others through the provision of love and kindness. Until the day when Jesus places our sweet baby back into our arms forever, it is our dream to use this life we’ve been asked to live to bless others and maybe in doing so, we will make sure that our precious little boy will never be forgotten.
For more information, please visit the Christian Michael Hernandez Foundation.
Meet the Wood Family
Honoring Kenley Wood
My pregnancy with Kenley was extremely ordinary until it very much wasn’t. At my 36 week check up, my doctor couldn’t find her heartbeat. She ran the ultrasound wand over my belly and we were able to see my baby girl. She was perfect, but perfectly still. I delivered her just before 9pm that evening via cesarean section. Her extra long cord had wrapped around her and kinked in several places. I held her for only a few hours. It was not nearly enough time, but it was all we had.
My nurse took a few photos of her and gave me a memory box containing her hand and foot print, a lock of her hair, the blanket they wrapped her in, and a few other things. I left the hospital with this box in my arms instead of my daughter. My second day home, I rummaged through the box and found the brochure for the charity that donated it to the hospital -Cherishing the Journey. Searching for some connection, I followed them on Facebook and saw a post they shared for the first annual Brianna Marie 5K. It was to be held on March 16, Brianna’s birthday – and mine. It was that moment that I knew I needed to go to this race.
Of course, being fresh from surgery, I couldn’t participate, but I just needed to be there. I needed to do SOMETHING on my birthday that brought some meaning to my life. I am lucky to have a wonderful support system who rallied around me and registered to run in Kenley’s honor. While my friends and family ran for Kenley’s Krew, I sat in a folding chair and looked around in awe. Aran had spent the last year turning her grief into something amazing. She accomplished – and continues to accomplish – so much in Brianna’s name. Two and a half weeks into my grief, this day was a key moment for me. It was the moment I realized that parenting doesn’t stop when your child’s heart does – that life goes on and we have to choose what we do with it.
I began writing a blog to chronicle my grief. I started speaking about stillbirth awareness and grief. I trained for half marathons to run in Kenley’s honor. I did everything I could to bring my life purpose and to honor Kenley in the way I saw Aran honoring Brianna. And I have attended every Brianna Marie 5K since. The Brianna Marie Foundation has made such a difference in the lives of so many families – including mine – and I am honored to be a tiny part of something so amazing.
~ Rebecca (Mom)