My name is Meagan Poore - my husband, Jeff, and I have a 14 month old son named Jacob and are expecting our youngest son Logan to be born on December 27th, 2017. At 22 weeks gestation, Logan was diagnosed with a rare and complex form of Congenital Heart Disease called Double Inlet Left Ventricle (DILV).
What is DILV?
Double inlet left ventricle (DILV) is a congenital heart defect that occurs in 5-10 of every 100,000 pregnancies. Of the nearly 4 million U.S. births each year, approximately 200-400 will be born with this condition. DILV is a "single ventricle" defect, which are among the most rare and complex congenital heart problems. Babies born with this condition have only one working pumping chamber (ventricle) in their heart. People often refer to the condition as having "half a heart", which is a simple yet essentially accurate way of describing the condition to family and friends.
A series of several open heart surgeries will be used to treat Logan's condition. While these surgeries do not "fix" the heart in the traditional sense (the ventricle cannot be replaced, regrown, transplanted, etc.,) they do create a type of circulation a child can hopefully live and grow with.
The first heart surgery may be needed within the first few days of life. The next open heart surgery is called the Glenn procedure. This surgery is usually done when the child is 4 - 6 months old. The final step is called the Fontan procedure. This surgery is usually performed between 18 months - 3 years old. Additional surgeries may be needed for related defects or to extend survival while waiting for the Fontan procedure. For the most severe cases of DILV, a heart transplant may be recommended. Symptoms often displayed in those with his condition include lower blood oxygen levels which can make physical activity more challenging, shortness of breath, increased breathing rate, skin discoloration, slowed physical growth, possible slowed mental growth, swelling of the limbs, high blood pressure and many symptoms associated with heart failure. He may require lifelong medications including medications to control blood pressure, and blood thinners to prevent a stroke.
Ways in which you can help include:
• Pray for Logan, his growth, development, and health. He is the one that will be fighting this fight. People refer to children born with congenital heart defects as "heart warriors". Logan is our heart warrior - pray that God gives him the strength for the battle he will be fighting.
• Pray for our family - for peace, strength, and wisdom. Our family will have a lot of tough days ahead. Long days at the hospital. Up days, down days, days where we don't know which way is up or down. Pray that this journey will strengthen our family. Pray that Jeff and I will have the wisdom to make the right decisions regarding Logan's medical care and that the right doctors continue to be placed in our path.
• Contribute to Logan's medical expenses. Many friends and family have asked how they can donate to Logan's medical expenses. While our insurance should cover a portion of medical expenses for our baby boy, it will not cover everything. In addition, one of us will no longer be able to work in order to make sure he has proper care during the day. If a surgery goes wrong or his heart is acting up, the working parent will have to take unpaid leave to be with our baby. Since receiving the diagnosis many things have changed including what is important to us as a family. We moved into what we hoped to be our forever home in March of this year. A short 6 months later we have decided it is in the best interest of our family's future to sell our home and live with family until we have a greater understanding of what is ahead. We hope this will allow us to secure enough finances to remain above water as we encounter challenges both foreseen and unforeseen. We have set up a GoFundMe account you can access under the "Ways to Help" section.
How Are We?
When we initially received the news our baby's heart was not normal we were devastated. This was the single worst news either of us had ever received in our entire lives. There was almost a full day between the initial discovery and any answers at a follow up appointment the next day. Unfortunately, when you are faced with fears and thoughts we faced that night, time stands still. When the next day finally came we were given more information. Most important was our son has a chance at life, but will require numerous surgeries and will face many challenges. It seemed impossible for something to be both the second worst but also the best news we have ever received. Although we are still in shock we know we must be strong for not only both our boys, but for one another. Amazingly our 14 month old son Jacob has been our rock. He loves us, laughs, plays, sleeps, cries, hugs and kisses us the same as always. He reminds us we have a duty to our family to stay strong together because we will need each other now more than ever.