Bernadette Bede

First post: Jun 28, 2021 Latest post: Jun 28, 2022
Even in-utero Bernadette was the wild twin- a hand placed on my belly could feel her straining her head something fierce.  When she and Genevieve made their appearances at 33 weeks, we considered naming this teeny, busy, life-filled kid Kateri after the Native American Saint of the Americas.  But instead, we discovered that she and Genevieve were going to be born on February 11, the Feast of Our Lady of Lourdes, who appeared to 14-year-old Saint Bernadette.  The spring she obediently dug has been the source of numerous miraculous healings.  

Enter our Bernadette- the preemie who quickly became known through the NICU as having a surprisingly loud set of pipes for her size.  And if you know her, you can attest that she is still singing; a lot.  And with the same gusto.

We discovered through a sudden doctor visit to my recovery room 3 days after their birth, as we were toasting each other on Valentines Day, that Bernadette had a heart defect called Truncus Arteriosus.  Bernadette's first open-heart surgery occurred when she had gained enough to weigh 4 lbs.   

At one year of age, Bernadette was diagnosed with mild cerebral palsy affecting her left side.  At this appointment, a doctor noticed that she had been bleeding internally.  We learned that she had a blockage in the portal vein to her liver, which delivers 70% of the blood supply to this organ.  

If we told you only the medical side of her story, you would hear about another open-heart surgery, a set of shunts that were placed, but failed, in an attempt to control her circulatory system in order to restore blood flow to her liver, and then a final open heart surgery at age 10, as well as numerous procedures, episodes of internal bleeding, and regular MRI's, CT scans, catheterizations, and blood workups.  Leading up to her most recent evaluation at the Cleveland Clinic, which led to an agreement among numerous doctors that Bernadette is in need of a liver transplant.

But that does not define Bernadette.  The truth about Bernadette is that she is carefree, fun, and dearly beloved.  She expresses a tremendous affection for every member of her family (6 siblings out, and one more Bede child to be born at the end of August), and she daily talks about how she "misses" this person or that friend; she wants to be in the presence of those she loves all the time. She has a deep love for her Heavenly Father.  You would see that, during every single procedure in recent years, she makes attempts to find common connections with hospital staff, often joking with them and asking them about their favorite music, color, etc.  She exudes joy, and I've seen nurses spend far longer than they probably ought to hanging out in her room and chatting.  To contrast with that, when starting an IV is not going so well or a procedure is difficult for Bernadette, she always has someone in mind who she is praying and offering her suffering for.  This has often included some of you.  

This coming Monday, June 28th, Bernadette will be undergoing a liver transplant.  The liver she needs will be provided by a lobe taken from her father, Philip (for those of you who don't know, the liver is an organ that regenerates, so they should both grow back to full size over time.  Strange but true).   

Many of you have probably already been on this journey with Bernadette and us to some extent, and we can say with confidence that she would not be the strong person that she is without your influence in her life in some way.  For others just joining us, we are so grateful for your interest and for your prayers for both Bernadette and for Philip, who knows the meaning of true love; to give until it hurts.  

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