Raising funds for congenital heart defect (CHD) research is not only critically important to all babies born with, and children and adults living with CHDs, it is also personally meaningful to us.
By donating to help us reach our fundraising goal or beyond, you’re helping to fund the most promising research into CHDs - America’s most common birth defect, affecting approximately 1 in 100 babies a year with 1 in 4 being fatal. 

Together we can make a life-saving difference! Read below to see Lincoln's story and diagnosis and thank you in advance!!

At our 20-week anatomy scan on Friday, September 13, 2019, we found out that Lincoln had a congenital heart defect called an Absent Ductus Venosus. An absent ductus venosus is associated with abnormal venous circulation, the worst prognosis being seen when the umbilical vein bypasses the liver and connects to the right atrium- this is what Lincoln had. An absent ductus venosus is associated with a high incidence of fetal anomalies and adverse outcomes, including malformations, chromosomal issues, in-utero heart failure, absence of the portal vein, liver complications, and fetal death.

During this appointment, they gave us Lincoln’s chance of surviving pregnancy…43%. They delicately informed us that he would likely go into heart failure if he continued to survive the pregnancy, and if he made it to delivery, he’d likely go into heart failure afterwards. In fact, there was very little mention ever during our pregnancy about the “after birth” part, because the main focus was if he’d even survive the pregnancy and the right now. We were given our options: termination, or continue on, hoping we miraculously make it to at least 28 weeks and if any critical issues occurred, we would deliver early. As one doctor said to us, “hope he makes it and then cut the cord and that problem goes away”. But that meant constant monitoring of signs of heart failure or additional defects, constant kick-counts at home to make sure he was still active and moving, waiting and seeing, biweekly ultrasounds and monthly echocardiograms and appointments with Cardiology, the list went on. While many heart defects affect the baby mainly AFTER birth and the baby continues to be supported by mom’s body during pregnancy, Lincoln’s was opposite since it was involving the umbilical vein. The Ductus Venosus is only required during pregnancy. It closes after birth after the umbilical cord is cut. However, additional heart defects or issues involving the heart, lung, and liver could result from this and affect him after birth and into his childhood.

No one ever wants to be in a spot to choose or hear a percentage of survival with their baby, but we cautiously held onto what that one doctor said and what we did know: there was a 43% chance he’d survive and that we’d be closely monitored. We kept doing our best to hold onto the positive “what if’s”: what if he is in the 43%, what if everything is mild, what if he doesn’t go into heart failure, what if we cut the cord and everything is fine, and most importantly, “it could always be worse”.

We grieved and struggled with the diagnosis a lot. It was very hard to go on daily and not worry and wonder if he was okay, if he was suffering or in any pain, and if he would remain okay. We knew all of the things we could do AFTER he was born to help him, but there was nothing we could do during pregnancy to ensure he’d survive. We felt guilt and fear 24/7. The condition was very rare and there was not much information on it. We were seeing the head of Pediatric and Neonatal Cardiology at Pittsburgh Children’s Hospital and he had informed us he only saw less than 3 of these cases in his entire career (at this point in time) and all were associated with genetic or chromosomal conditions. We then even went to Nationwide Columbus Children’s Hospital for a second opinion, and their head of Cardio and her team had only ever seen a handful combined, too. Nothing was pointing towards an optimistic or reassuring ending.

So every one to two weeks we’d hold our breaths and pray for a safe and healthy Ultrasound and appointment. Every month we'd do the same with his heart scan. Because his umbilical vein was directly attached to his Right Atrium, his heart was becoming severely enlarged or “Severe Cardiomegaly”. It started out at a ratio of 0.38 at the 20-week appointment. Then went to 0.44, and then to 0.51. Then it hit 0.60. 60% of his chest cavity was taken up by his heart. And by the time he was born almost 0.70. He had moderate Right Ventricular Dilation with borderline systolic function. Tricuspid valve insufficiency. Moderate Dilation of main pulmonary artery. Multifenestrated Atrial Septal Aneurysms. Moderate Septal Hypertrophy. Dilated Ascending Aorta. Mild Mitral Valve Insufficiency. Mild liver enlargement. Low Lung Volume. And Mesocardia.

Every term added to the stress and worry. But we made it to 28 weeks, and then 30, and then 32. Each week his heart would get bigger and bigger and the doctors’ fears for heart failure would increase. And then our minds were distracted as I ended up with asymptomatic Preeclampsia and being admitted to the hospital at 33 weeks. But after a week of back and forth in the hospital due to my blood pressure randomly increasing and heart rate drops for Lincoln, it was necessary to induce labor and deliver our baby boy. To this day, I wonder what would have happened if I hadn’t had to deliver him so prematurely. I think in a way it saved him. His heart could not handle getting any bigger; it would not have been able to function properly. Things could have been so much worse. After a brutal and critical delivery, Lincoln had a month long NICU stay for a variety of reasons, but his heart was very closely monitored. Once again, our lives were filled with frequent appointments, echocardiograms, EKGs, etc.

While our pregnancy was a traumatic journey with CHD, we know how lucky we are to now have a relatively healthy child. Right now, Lincoln’s heart is still enlarged, but his body will continue to compensate for it as he continues to grow. His heart is still incorrectly positioned, and likely will always remain this way, but this should not cause any harm ever. Otherwise, we are waiting to see if the holes in his heart close on their own and if not by his appointment this year, he will require a repair. He is otherwise healthy and happy right now and being closely monitored. We acknowledge that privilege, because that was not always how it was going to look. A 43% survival. Heart failure. Liver issues. Lung issues. Knowing what we know and can see now, we constantly feel grateful. 

I have connected with many parents in the CHD community whose babies have frequent surgeries, or ones that sadly didn’t survive past a few months of life. Who probably wonder (like we have at one point), “why us?” This walk and these foundations help support these parents who clung to the good  “what if’s”, for the parents who live in constant anxiety or exhaustion and struggle to cope due to fear, anger, and sadness, for the parents who struggle financially to support their child's condition, and for all of the children who fight or have fought for their lives daily. It is not an easy journey and it shows our support for this disability and for the struggles they will face throughout their lives and hopefully overcome.

CHD can differ in many ways. It is not always visible, but it is always overwhelming and draining physically and mentally, to both the patient and family. These babies truly fight hard from day 1 and there is so much more to it than people could ever realize unless they unfortunately have lived it, too, and we would never wish it on anyone. If you’re interested in joining our team to fundraise for the Children’s Heart Foundation, please register! There is NO cost to walk, but fundraising or donations for our team is encouraged! You can simply share the link and people can donate directly :) Please also let me know by text or Instagram DM if you would like a team T-shirt that we will be making for the walk to support Linc!

I can assure you that every parent of a baby with CHD who has spent countless hours in prenatal appointments in cardiology, time in the NICU or CICU and/or witnessed procedures or surgeries on their child is BEYOND grateful to everyone who participates. At 20 weeks, we chose to fight for Linc and he has fought even before that moment. So because of him, and knowing that we personally will always have a small chance of having a baby with a CHD, we will continue to fight for all other babies and parents in this position, too, and strive for better research and treatment. We are always in disbelief at our little (big) guy for his journey. After surviving a brutal CHD journey during pregnancy, a near fatal delivery, birth injuries, brain injuries, and a continuing heart issue, we know it has NEVER been easy for him or us, but it has always been so, so worth it. Very few can say they witnessed a miracle and we are lucky enough to have witnessed quite a few through him. We know firsthand, the bigger the heart the bigger the fight. And thanks for joining the fight with us! If you choose to walk.... just wait until YOU see all the adorable little miracles, too. We love you all! Xoxo,

Alex, Garret and Lincoln