Brystol | 8 months

February 05, 2016  •  4 Comments

Meet Brystol.  The photos in this post are from Brystol's 8 month photo session, but the story here is about her journey in life. 

I shot this session on October 21, 2015 - exactly one year, to the day, after her parents discovered at a prenatal visit that she had a severe heart defect.  We didn't plan for the session to fall one year later, but ironically, it did. 

And, as I was writing this post I learned that February is Congenital Heart Defect (CHD) Awareness month.  Again, how ironic.  Or maybe not. 

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From the beginning, doctors informed Brystol's parents of what they should expect after she was born.  Her condition was very serious and the outlook was quite scary.  Below is a list of her diagnoses:

  • complete av canal complex
  • dextrocardia
  • heterotaxy
  • interrupted inferior vena cava
  • mixed anomalous pulmonary venous return
  • right ventricular hypertrophy
  • right sided aortic arch
  • ventricular septal defect

I have no idea what any of that means - except that her heart was very, very sick.

The doctors explained that they would probably have to do CPR on her, and she would mostly likely need immediate surgery for a pacemaker.  There was a 60% chance that she would be born with down syndrome.  They anticipated that she would need to be in the NICU for at least a month, maybe more.

BLOG-5455BLOG-5455 Brystol's heart rate was very low while she was in the womb.   A low heart rate was not a typical symptom of her heart condition.  The doctors cannot explain why it was low.  It should not have been based on the defects.  But because it was low, they were able to diagnose the heart problems early. 

The low heart rate can really only be explained as a blessing in disguise.  Had her heart rate not been abnormal, no one would have known there was a problem until she was born.

BLOG-5459BLOG-5459 After delivery, things didn't go quite as the doctors had expected.  Once she was born, her heart rate was NORMAL.  It had never been normal while she was in the womb, but as soon as she was born, it was.  No one has an explanation. 

She was blue after delivery and was put on oxygen for a few hours, and then her skin turned pink.  She didn't need CPR.  She didn't need immediate surgery for that pacemaker.  She wasn't a down syndrome baby.

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She was in the NICU only 4 days, not a month or more as they had previously thought.  She still had the heart defect, and would still need surgery, but very fortunately, they were able to wait on the surgery.  They wanted her to grow as big as they possibly could let her before they started the process of repairing her heart.

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The surgery was scheduled and then cancelled and rescheduled a few times.  She eventually had the first surgery when she was 7 months old. Before surgery, Brystol's heart was having to pump harder than it should have been, just to keep her blood circulating.  Her hands and feet were always cold because of bad circulation.  There was also pressure on her lungs and all of this was painful for her little body.   

BLOG-5488BLOG-5488 The doctors were not able to do everything they wanted to do in that first surgery, but what they were able to accomplish has eased her pain.  Her heart no longer has to work as hard, the pressure on her lungs is gone, and her circulation is much better.  Her hands and feet are warm now!

Brystol's journey is far from over.  She will need another surgery, most likely in about 3 or 4 years or whenever she starts showing signs that her body is stressed.

Everything that was predicted in the beginning, Brystol has surpassed.  Doctors are completely in awe and cannot believe she is doing so well.  Developmentally, other than her heart issues, she is right where she is supposed to be.

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Brystol has three big brothers who spoil her rotten and dote over her non-stop.  She adores them too.  The support for Brystol and her family has been amazing.  They can see and feel the love and support and are very grateful for every bit of it.

"Through this journey I have questioned so many times 'Why my baby? Why do I have to watch her go through these awful things?'.  It is not my place to question, even though it is hard not to.

God places you on these journeys for a reason.  I have held his hand many times and received his blessings numerous times.  One of the hardest things I have ever done was hand my baby to these people who I didn't even know and trust God that I would see her again.

Through all of this it has made our family stronger and me as a person stronger.  I enjoy every minute that I have been blessed to have with her.  I have seen things that no parent should ever have to see.  I have been blessed with friends and family that love us and support us.  Heart babies are truly amazing little people and have so much fight in them."

- Brystol's mom


I wanted to share with you an organization that has become very important to this family - a group affiliated with Kosair Children's Hospital, Brave Hearts is a support group for families with complex congenital heart defects.

Visit Brave Hearts website


I don't know why we scheduled this session on the anniversary of the original diagnoses for Brystol.  Or why I waited until now to write this (besides the fact that I'm a procrastinator) and that it just so happened to fall within the CHD Awareness month.  But deep down, I don't think all of that was really coincidence.  I've been given a platform that reaches a somewhat decent amount of people.  Big enough that it might matter to someone.  And for whatever reasons, I believe all the timing happened just as God had wanted.  And I'm so very grateful to be able to be a part of helping tell this little girl's story.

Brystol's one year session is coming up soon.  I'm very excited to get to photograph that big milestone in her life and then share it with all of you! 

I'm sure her family would appreciate all prayers for Brystol, as she still has a very tough road ahead.  Feel free to leave this family some encouragement and love in the comments here on the blog!  Much love to you all.

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Comments

patty wilson(non-registered)
Raye & Trav, I join w/ you & countless others in praising Almighty God for all that is well w/ baby Brystol. She is absolutely beautiful! Forever on Team Brystol
Stacy Collins(non-registered)
She is such a beautiful angel! So inspiring! Love her to pieces!
Lindsey Wilson(non-registered)
Michelle, that was beatifully written and timed! I love this little girl and her family as much as my own and have seen them go through these tough times. They have all been so strong and amazing!
Jessica(non-registered)
Prayers for this sweet baby and her family.
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