Featured cherub of the week is adult CDH survivor Taylor Hacker. Taylor is the daughter of Chris and Kristy Hacker. Taylor is currently our CDH International Kentucky Ambassador. Taylor will graduate in 2020 and hopes to become the first FBI agent that is also a CDH survivor. Taylor had this to share about her CDH journey:
“About three years ago I was packing up to move to a different house and I found my grandmothers handwritten journal documenting nearly every day of my mom’s pregnancy with me as well as my CDH diagnosis, surgeries, complications and accomplishments. Her journal contained information and stories from the time of my battle with CDH that I had never heard of which sparked my interest and eventually led me to finding Cherubs.
When I heard that I could get involved with Cherubs and help other CDH families in any way possible, I jumped at the opportunity immediately. I know that for most people, when you hear that your child is going to be born with Congenital Diaphragmatic Hernia you have an endless amount of questions. You’re uncertain as to what it will entail for your family and your baby. You most likely don’t have anyone in your life that has been effected by CDH which leaves you with the issue of not being able to ask others for advice as to how to deal with the daunting diagnosis. My hope is to share enough about my experience with CDH as possible and ease some of your worries and answers some of your questions.
I was born at the University of Kentucky hospital on December 20, 1996 with a severe case of right-sided CDH. The months leading up to my birth were packed with back to back doctor appointments and uncertainty for my parents. In October, my parents learned through an ultrasound that my heart was misplaced which was the first sign that something was wrong. About a week later, they were sent to a larger, more specialized hospital for a follow up ultrasound where doctors told them that my diagnosis was that I had a mass on my lung and confirmed that my heart was misplaced. On October 24, I was diagnosed with CDH. Upon that diagnosis, a procedure was done on my mom where they drew amniotic fluid and drew blood from the umbilical cord to test for any other possible birth defects. A few days after that, the results came in with results confirming that CDH was my only birth defect.
After the confirmation that it was only CDH that we were dealing with, doctors gave my parents three choices. First, was abortion due to the severity of my diagnosis. Second, was to attempt to sign up for an experimental study being done in California which was a surgery they would perform on me while I was still in the womb. The third option was to deliver me normally and see what happens. My parents signed up for the experimental study but were declined because they were only accepting the “best of the worst” and my case was too far gone. Which led my parents to choosing option number three, delivering me normally. Doctors then informed my parents on the details of my case. The hernia had allowed my liver and other organs to enter my chest cavity and would most likely prohibit lung growth. My mom was told that if she could make it to 39 weeks that they could perform a C-Section and operate on me if I had enough lung tissue to sustain life and I would also be placed on ECMO. ECMO is a machine that acts as a heart and lung bypass. Its main purpose is to oxygenate the blood in the patient’s body by taking blood out of the body through the carotid and jugular, cycling it through the machine and adding in oxygen, and then pumping it back into the body.
There were a few times that my mom had contractions and was admitted to the hospital to be given medications to stop them. In late October she went in for contractions and was given the medication to stop them as well as a steroid shot to promote my lung development. On November 7, 1996 my family received the worst news of all. According to ultrasounds and reports from others doctors around the U.S. that had been asked to examine my case, I had no lung tissue. Due to this finding, I was given a 0% chance of survival. After receiving this news, doctors told my parents that the plan has now changed. Delivering me by C-Section, placing me on ECMO, and operating on me as soon as possible was no longer an option. The new plan was to deliver me normally and let my parents hold me until I passed away because there was nothing anyone could do to save me. Even with news as horrible and heart-wrenching as this, my parents still didn’t give up hope. My dad always said, “as long as her heart is beating, we aren’t giving up.” I was my parents first child and they decided they wouldn’t give up hope that a miracle would happen. My family has always said that they had to lean on their faith during these times more than ever because their faith was all they had.
Despite my diagnosis, my parents still had a baby shower about a month prior to my birth. We’re from a small town in Kentucky where nearly everyone goes to church. My parents being constantly surrounded by Christians like them who also have faith in times where others may not, helped my parents keep up hope that there would be some sort of divine intervention.
Ten days before I was born, they had another appointment to see if there was any change in my condition. It still showed that I had no lungs and my organs were misplaced. On December 20, 1996 they induced my mom’s labor and I was born five hours later. My grandmother wrote about this day, “She was alive and God had given her a lung. Dr. Fontenot placed Taylor on Kristy’s stomach. Chris and Kristy were crying so hard they could barely breath. Taylor made a small noise and the doctors told them to clean out her mouth.” Due to the fact that I made any noise at all, that led doctors to believe that I did have a minimal amount of lung tissue. I was put on a respirator and taken to the NICU. Multiple doctors worked on me for several hours and at four hours old I was put on ECMO. At the time, I was the youngest patient at the University of Kentucky hospital to be put on ECMO.
Doctors waited four days to see if I was strong enough to endure reconstructive surgery. On Christmas Eve, they decided to perform the first surgery at the hospital ever done on an infant who was currently on ECMO. This was a major risk because to be on ECMO, you have to be on high doses of blood thinners to ensure that the blood doesn’t get clogged up in the machine. Obviously, being on blood thinners before and during any kind of surgery is extremely dangerous because it increases the risk of bleeding out. My family was told that during my surgery they would cut horizontally across my abdomen, move my abdominal organs from my chest cavity down to their correct places, check to see if I had enough lung tissue to work with, move my heart from under my left lung to the center of my chest cavity where it belongs, and insert a man-made Gore-Tex patch in place of a diaphragm and sew it to my ribcage to keep it in place. During the surgery, they discovered that I had approximately half of a left lung and a “bud” of a right lung, meaning the very start of a lung but not functional at this point due to how small it was. At one point, I began to bleed out and they almost lost me. Thankfully, the surgery was a success and I was transferred back to the NICU. My parents were told that I would be in the NICU for at least a year due to my instability. To everyone’s surprise I gained enough strength and stability so rapidly that I was able to go home just one month after my surgery, 11 months ahead of schedule.
My dad was a Lexington Police officer at the time so they buckled me up in my car seat and the three of us went home in his police car because they thought that would be the safest. My mom and dad have both always said that they were petrified to bring me home because we had all been through so much and they were afraid they wouldn’t be able to take care of me as well as my doctors and nurses back in the NICU. I went home on oxygen and a heart monitor, which I stayed on for months. There were nurses and physical therapists that came to our house every day to check my health and strengthen my abdominal muscles.
My health continually increased and I achieved all the milestones on time with what a normal baby should which was a major surprise considering the fact that my parents were told that if I did survive somehow that it was a possibility that I would never be able to function as a normal person and at the very least I would have developmental delays. News quickly spread of the “Miracle Baby from Berea” through our small town of Berea, Kentucky and eventually through the entire state, and then nationally. I was the Children’s Miracle Network Miracle Baby of 1997, my story appeared on the 700 Club on CBN, local and state news, and the University of Kentucky Basketball team of 1997 held a fundraiser to help pay off my medical bills.
At three months old, my parents took me to the doctor for a checkup. This was the first time I had left our house and the first time they had to transport me with my oxygen tank and humidifier attached to it since they brought me home. My mom was uncertain how to load up the oxygen tank and humidifier in the car so she called the company and asked for their advice. She was told that it was okay to lay them both on their side on the floorboard. Which was incorrect. Once we had been on the road for a couple minutes, my dad leaned over from the passenger seat and checked on me in the backseat. I was blue because unbeknownst to them I had been drowning on the water from my humidifier through my oxygen cannulas in my nostrils. As a police officer, he had been trained on how to give CPR so he took me out of my car seat and began CPR while my mom drove us to the hospital to get help. We suspect that this incident began the process of slowly dislodging my Gore-Tex patch and eventually leading to a reherniation.
When I was 7 months old, they discovered that I had reherniated and had to go back to the hospital and have another reconstructive surgery, this time a little less risky because I wasn’t on ECMO. The surgery went well and I went home soon after. Thankfully, this was the last time I ever had any major complications due to CDH. I have had a multitude of minor health issues such as acid reflux (which is common with CDH babies), an occluded right carotid and jugular due to the ECMO, discovery of a cyst on the pineal gland in my brain, debilitating migraines and asthma. Some of these things are connected to CDH but others are just by chance. Due to the fact that my right carotid and jugular do not work, my body has learned to compensate for the lack of blood flow to my brain by widening my occipital arteries which deliver blood to the brain just as the carotid and jugular do.
Two years ago I went to the ER because I was having trouble taking deep breaths and I was feeling some discomfort in the area where my repair was done. I go to school in Kentucky and my parents live in a different state so I called them to tell them what was going on and since we keep in touch with some of my old doctors and NICU nurse, they called my old nurse who still lives in Kentucky and asked if she could meet me at the ER so I had someone who knew my medical history and so that I wouldn’t be alone. They did a CT, drew blood and checked my vitals. The results were completely unexpected by everyone. The doctor came back to my room and said, “I know that you were born with CDH and I know the severity of it. But the results from the tests we ran today show that you are completely healed. You have grown your own diaphragm that has encapsulated your Gore-Tex patch and you have a nearly full left lung and about 75-80% of a right lung.”
Despite the multitude of major medical issues that I’ve had to endure, I have overcome every single one of them. In high school I played varsity softball with 75% of a left lung and 25% of a right lung with no limitations. I’ve traveled around the country and lived in a total of five different states. I learned how to play guitar at a young age and later played guitar for a large church in Virginia. Today, I’m 22 years old, engaged to be married, and attending the University of Kentucky studying Communications and Criminology. On top of that, I’m currently an intern for the Federal Bureau of Investigation and aspire to be the first FBI agent who is a CDH survivor.
I personally feel like it’s huge waste of your life to not chase your dreams and turn them into a reality. I think it’s crazy to take “no, you can’t do that” as the simple truth and not challenge it. From our experience with CDH, my family and I have a unique outlook on life and it undoubtedly is to thank for the four of us being so close and is also to thank for my parents having such a strong, healthy marriage. You can take something horrible, stressful and difficult like being diagnosed with CDH and see it one of two ways. As a patient, you can feel sorry for yourself and be mad that you don’t have a life as easy as other people your age or you can see the fact that you conquered what hopefully will be the most difficult thing in your life decades earlier than most other people will and see it as a blessing that you get to share your trials and triumphs with others, bringing them hope and encouragement. Going through something of this magnitude as both a patient and a family member makes things that make most people feel angry, aggravated, hopeless seem incredibly small and conquerable. CDH becomes part of your identity because it is such a huge part of your life and who you are. As difficult as dealing with CDH and its effects has been on my family and I, I am so grateful that I was born the way I was. Without the experiences that have come with it, my family and I would be totally different people. Experiencing the trials and triumphs that come along with it makes for the complete opposite of a superficial person. It makes you thankful for the little things that most people aren’t. It makes you happy just to be alive because you know how close you came to the alternative. It makes you interesting, relatable and abnormal in the very best way possible.
If you or a family member have CDH, getting involved with Cherubs is the best way to gain a sense of community and support from people who understand what you’re going through.”
