A Baby Named Beckett

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.

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13 thoughts on “A Baby Named Beckett

  1. Wow. Thanks for sharing this, Amy. I’m so glad Michelle found you–I can’t imagine anyone more equipped to help support them through this, no matter what happens. You know I’ve been praying for you guys since we first heard what was going well before Matthew was born, and I will definitely have Michelle, Beckett, and family in my prayers, too.

    Michelle–thank you so much for being willing to share your story with us through Amy. Amy has one powerful bunch of prayer warriors at the ready, and we will definitely be praying for you and your family, especially little Beckett. Stay strong, have faith, and know that you are loved! Blessings and hope for miracles of all kinds for all of you.

  2. So many prayers and thoughts are screaming in their direction!! My heart goes out to Michelle and her family. I hope she knows just how much we all are rooting for a happy outcome!

  3. Sending prayers and love for all of you. My tears I will selfishly keep, as an extra reminder to pray. May our merciful Lord keep you close to His heart.

  4. wow what a story. remember God is the only one who knows what will happen, he has our story written already.
    When I was pregnant with william and living in a shattered world knowing my baby had a heart defect and would most likely be born with Ds, I had several moms tell me they had test run while pregnant to show horrors with their unborn babies and no problems occured when their little ones were born. Tests arent always accurate and things can change. I hope that made sense.
    I will keep the family in my prayers during this difficult time.please keep up updated on baby B
    in christ,
    april

  5. Michelle, I’ll be praying for baby Beckett and for your family. Thank you for sharing & trusting us to pray for you.

  6. Michelle! I am so sorry for the pain you are going through! I am praying hard for your family and Beckett! Just lean on the Lord and your family and know that miracles do happen! Stay strong, lots of prayers for Beckett!
    Janessa

  7. Michelle – What a precious little life you’re carrying! I’ll be praying for you and Beckett. Did Amy happen to share a CaringBridge site with you? My friends, Carrie and Rich Delaney, have a daughter, Gracie, who just had her 3rd OHS (this time in Boston… first two in Minneapolis). They repaired her AV canal into a 3-chamber heart after she was born. This 3rd surgery (age 5 months) has given her a 4-chamber heart and her O2 sats are in the high 90’s! Their surgeon in Boston is Dr. Del Nido. He’s the expert in HLHS and complex repairs.

  8. Michelle, I pray for wisdom and God’s peace for you and your family. As we walked with Amy through Matthew’s roller coaster journey, I had to remind myself that God would somehow bring good out of his situation, whatever the outcome, though our minds couldn’t perceive how that could possilby be so at the time. May He grant you strength, faith, and courage. Your great pain is a sign of your great love for your son and for the Lord.

  9. Thank you for everyones supportive words and prayers. This has definately been the most difficult road Myself and my husband have ever travelled. The unknown is toture, and lead to a daily battle to stay positive. I know only God knows the outcome and whatever it is is his will, it’s just so hard to give it over. Please continue the prayers, as we need as many as we can get!!!

  10. Oh Michelle…I’ve been out of the blogging loop for a while and I just saw this. I’m so thankful that you found Amy. She will be a wonderful resource for you and a prayer warrior for you and especiallly, for Beckett. I will be adding all of you to my prayer list. May God bless you and your precious gift from Him!

  11. To all you wonderful people.

    It pains me to bring you all the news that baby Beckett lost his fight with his heart condition yesterday. Michelle and I believe with all our souls in the power of prayer. I want to personally thank each of you for doing your part to pray for our family. My initial prayers were answered when Michelle found this blog on Baby Mathew. Michelle and I were loosing hope and lost and then she found all of you! Thank you for your blessings, kind words and heart felt prayers. I love Michelle more and more each day, her strength to carry on is nothing short of amazing to me.

    Ben

  12. In so sorry to hear baby Beckett has lost his fight. My heart aches for his family.
    My son also had and ubavc (and yes that precious extra chromosome) we initially started the single ventricle route ( and had the first two surgeries in this series of 3 surgeries) then found our way (with Gods help!) to Boston and dr del Nido in May of 2008, Will had a full biventricle repair. He has 4 awesome chambers and 3 years later still doing awesome!
    We know Gracie…above mentioned too!
    Im glad to hear Mathew is doing so well and am always searching for more babies with DS and ubavc either fully repaired or living with fontan. I have found 12 others, (14 including my son and your Mathew) with repairs, I initially found 3 with the fontan 3 years ago, but have lost touch and despite repeated email attempts have not heard back from their parents.
    If you know of any precious kids, feel free to pass on my email

    • Kim, Thanks for the comment, and the information. We knew that Matthew surviving with his heart condition was very, very rare – but didn’t realize just how rare! So glad that your son is doing well – what a precious miracle. We’d be happy to keep in touch.

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