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.
Aaron
Aaron & Jen-
Thank you for your willingness to share your heart and your needs. I love your family dearly, and consider it a privilege to join you in prayer for Owen.
Kimberlee Lewis
Aaron and Jen,
I will keep your beautiful family in my prayers. Please travel safely on Tuesday and it sounds like a great place to go for answers. When you feel it is ok to share your story so I can ask a group of friends that we call on each other’s for prayers
God Bless and prayers lifting your family up! God is good!!
Hi, Lori! You’re free to share our story. Thanks so much for praying!
Beautiful tribute to God’s faithfulness. And thanks so much for giving this little son a name, especially such a significant one. It makes me love him all the more. I will be sharing this post with all my friends.
Dear Aaron and Jen, I don’t know you well, but I dearly love Owen’s grandparents Kerr, and will be praying as often as God brings you all to mind. My heart is heavy, so I know that will be often! Love in our most gracious Savior,
Praying with you for baby Owen.
This was so beautifully written! I praise the Lord for your sweet message of faith. It’s amazing how God can use our children to encourage us. It is a difficult path which God has asked you to walk, but you do not walk alone. Whatever His choosing is for you both, your children, and your precious Owen, we will uphold you in prayer. May God grant you hope, courage and faith in His great ultimate plan if the days are dark and discouraging! When you see Him answer prayer, we will rejoice in praise with you!
Paul and Mary Vliek
God bless you and Baby Boy Owen. We will be praying and we will be looking for updates.
Aaron, my heart is saddened to hear of this diagnosis and the danger to Owen. I am glad to hear of your family and children and pray that Owen will be running with you in the sunlight without a care. I will pray for miracles for I believe our God is a God of miracles, and for strength for you and your wife as you travel this path. Thank you for sharing that I might pray with you in this time.
I am praying for little Owen and for God’s comfort to him and to your family. One thing is for sure: God has Owen in His hands and knows exactly how to take care of him. Be comforted in knowing that God loves Owen.
We’ll be praying for you and your family Aaron. Your faith is such an encouragement. Owen is blessed to have such a wonderful family to love him.
Dear Aaron, Jennifer, and children,
Paul and I send our love and prayers for all of you. May God give you all His peace, comfort and strength.
We will be lifting little Owen up daily to our Great Physician.
Paul and Brenda
Aaron, will pray, and am praying! The wonderful people at Mott’s Children’s hospital helped our youngest, Johnathan, with his head deformity. He’s grand, now! I pray our Heavenly Father will direct you and guide the doctors, and will heal Owen completely. xoxoxo
Dear Aaron & Jen.
I don’t know you but I do know Owen’s Grandpa & Grandma Keer. They are dear friends of ours at Berean. Becky shared this with us in class yesterday. As she spoke my heart went out to you. I will be praying for Owen & both of you. We know God is the great healer. Will be looking for update so I can pray specifically for your needs.
Will be praying for you, Jen and Owen. Our God is great!
My beloved Aaron and Jen, Kayla, Madeline, Savannah, Sophia, and Jonah,
all the way from Africa my prayers and those of others are coming. It was so wonderful to think of my grandson Owen instead of just “little baby boy Kerr.” Thank you for the news so far, and I am ready to hear how the visit at Mott came out. May is little strong heart push back!
Love forever,
Grandpa
The DeWeerds are joining team Kerr in prayers for Owen and his awesome family. Love, peace, stamina to you all.