An ultrasound last week for our sixth child revealed our baby boy is being affected by a type 3 congenital pulmonary airway malformation (CPAM). This is a non-cancerous mass which develops on the lung of a baby in the womb.
The condition is rare; it affects around 1 in 30,000 live births. Unfortunately, the type we are facing is a small percentage of those cases and is the most severe. The mass on our boy’s lung has grown to the point where it is putting pressure on his heart and the surrounding blood vessels. This pressure can eventually restrict the heart’s function and cause heart failure.
Problems with the heart are typically identified through the presence of hydrops – pockets of fluid which build up in the baby’s body as the heart can’t fulfill its normal functions. There isn’t evidence of this problem yet in our boy. But the diagnosis is still a serious one which could put his life in danger. A ratio of a baby’s head size to the size of the lung mass is typically used to measure CPAM severity; that ratio currently puts our boy at the highest risk level.
We were blessed to make contact with Mott Children’s Hospital in Ann Arbor on Friday. Jen and I have an appointment there Tuesday morning; the visit will include another ultrasound to confirm findings and then a discussion of how to proceed. Grand Rapids does have an excellent children’s hospital. However, based on our research, prayer, and an amazingly helpful discussion Friday with another specialist who has dealt with numerous CPAM cases, we felt Mott was best equipped to help. We will know more after our first visit, but we expect we may be making a lot of trips across the state in the weeks to come.
Many of our friends and family have asked how they can help. I’ll share a few specific needs below. But first we wanted to share something with you – a name.
We typically haven’t revealed our chosen baby names early. But we’ve found it much easier to pray for our little guy by name and thought others might feel the same. Since there may be a battle ahead and we need him to stay strong, we have named him Owen, which means young warrior.
For those of you who will join us in prayer, here are our current requests:
- Please pray the mass in Owen’s chest will shrink while his heart stays strong and fully functional
- Please pray for a great visit to Mott on Tuesday. We ask for a good ultrasound and for wisdom as we discuss a care plan.
- Please pray for Jen. As an already-busy mother of five, she carries a fun but full load every day. The fears and what-ifs can overwhelm her. Please pray for comfort and peace in the midst of a difficult time.
We plan to post regular updates on Owen here on our website; we’ll also share links to each post on Facebook. If you want to get notified by email when we have news to share, you can use this link to sign up.
Thanks to all of you who have already reached out to offer help and encouragement. It strengthens us to know we’re not facing this uphill battle alone.
Sitting down for a meal and looking at the faces of my five children, laughing with them as we run and play in the fall sun, feeling their closeness as we all sit and read together: each of these situations can overwhelm me with wondering joy. It seems extravagant to ask for one more healthy child in the face of such life-giving grace. How much blessing can one man expect in his life? Do I dare to ask for more?
But my experience with God has taught me to ask for great and wonderful things. I’m asking God to do a miracle of healing in our little boy. And while the matter of whether we will be blessed to hold and raise Owen is still in question, the goodness of our God is not.