About a month ago, I received this email:
I just felt compelled that I had to write to you…. I don’t know what I expect or maybe I don’t, but your story and that of your son Matthew has given me the only hope I can find. We are currently expecting our 3rd son, and I am 20 weeks into the pregnancy. We have had abnormal blood work, abnormal ultrasounds, cardiologist consults, you name it. It seems we are probably looking at having a son with down syndrome, though we have had 2 unsuccessful amnio’s (my sac is not fusing with my uterus properly). We have been informed he has a complete unbalanced AV canal defect, coarctation of the aorta with small stenotic aortic valves, and hypertrophic left heart (as Matthew had)… We found out 2 days ago that he also has bilateral club feet. I am so overwhelmed and just feel that we are living his death sentence daily. We will have continued fetal echocardiograms, but things look grim. I am so blessed to have read your story to see that he might have a chance with prayer and miracles. I pray that we are as fortunate as you, and wish you and yours the best life can offer… Michelle
Since then, Michelle has kept me updated with emails, and we were even able to talk on the phone late one night. She has given me permission to share her story with you, and is asking for your prayers for her family and baby Beckett.
I’ve talked with a lot of expectant parents since starting this blog, and am so grateful that Matthew’s story has offered hope to so many. But, I’ve never heard a story that mirrors Matthew’s journey as closely as baby Beckett’s does.
Michelle is a pediatric nurse practitioner – well versed in the medical aspect of all of this. (I now truly believe that God sent me to get my medical training for a very specific reason, who we named Matthew.)
They came to many of the same conclusions that we did at that point – comfort care, an unmonitored delivery without C-section, love him for as long as we have him … but let God decide when and how He takes this baby home.
But, just today, they received news that is so much like our 2nd visit to Seattle Children’s, it’s uncanny. It’s the peculiar mix of good news and bad news that leaves parents reeling. Beckett’s left ventricle has grown a little, making him a borderline, unknown case of whether it could be functional when he is born. He also has a pesky valve flap that, if it doesn’t straighten out, will make a repair impossible. They just have to let him grow, and wait and see.
For Michelle and her family, this means that instead of a comfort-care baby and delivery, they now face the scary possibility of C-section, surgical team, cardiac team, hospital ethics committee, etc etc. It really turns everything upside-down.
For me, the remaining weeks of my pregnancy were the most difficult part of our journey with Matthew. There’s a reason I never wrote “Chapter 5” of our whole story … it was just too hard. It was a dark and difficult time, full of worries and unknowns. Having a baby who is going to heaven sooner than you’d like is terrible – but so is having a baby who has to face multiple, risky painful hospitalizations and procedures. And not knowing – or having to make that decision for your child – is something no parent should ever have to do. During that dark time, I couldn’t even fathom a third option: a healthy, beautiful happy and delightful boy, who aced his way through only one heart surgery.
Please pray for Michelle, her husband, and baby Beckett. Pray that they will have peace and clarity in all the decisions they will need to make, for strength in this difficult time.
If you want to leave them a note of encouragement, or let them know that your prayers are with their family, you can leave a comment here. She’ll be reading this.