Brynn’s Story {CHD Awareness}

It was September 2012…”Chase, I think I am pregnant!!!”  Shock and excitement immediately set in.  It took us a year and lots of struggles to get pregnant with our son Brody, so to get pregnant on the month we started trying was absolutely amazing {and so God!}.  But the nervousness quickly set in…TWO kids!  How in the world was I going to manage TWO kids?  I had to remind myself to breathe and that people do this every day.  So we will be a family of four rather than three.  Here we go!

Fast forward to December 2012, I was 18 weeks pregnant driving to our doctor’s appointment to find out what this sweet bean growing inside of me is. Girl or boy? My husband thought girl, but I thought boy.  We got into the room, I laid down, and was thrilled to begin the ultrasound.  The tech looked at every finger and every toe, and then finally said – “It’s a GIRL!”  We had a name already picked out, so we knew that Brynn Faith it is!

Chase and I said we really didn’t care the sex as long as the baby was healthy, but we were secretly so very happy to be having a girl.  Normally during the anatomy scan, this is the part where they quickly check the organs and make sure the baby is growing properly.  No big deal.  We already had one perfect, healthy, amazing child, so naturally we thought we would just be given another.  That’s how it works, right?  Not so much.  We knew about 35 minutes into the ultrasound that something wasn’t right.  The tech was really focusing in on her heart and looking at the screen very intensely.  I brushed it off thinking that she was just busy taking so many pictures of my beautiful little girl so that she can start her modeling career early.  But no.  As soon as she finished, she asked the doctor to come in and take a look.  Things started to get real for me.

I immediately asked what was going on, and the doctor told us that she is concerned with the baby’s heart.  She didn’t think that it was developing correctly.  She kept referring to my sweet little girl as “it” and “baby,” and i just kept thinking – This baby is a GIRL, and her name is Brynn Faith!   I kept having to remind myself to breathe as I listened to her explain that either it is too early in gestation to see things properly or that Brynn might have Hypoplastic Left Heart Syndrome {HLHS} which is where the left ventricle of the heart isn’t developing correctly.  Tears started to flow out of my eyes.  I never expected to hear these kinds of things, especially since I already had one healthy child.

We left the appointment numb, lost, and wanting answers.  Immediately, we started praying, pleading with God, “Lord, please don’t let this be.  Let it be a mistake.  Take this from our sweet Brynn.  Lord, I am selfish, these things don’t happen to me.  They happen to others.”  But I knew this was real, and I knew that if we were going to get through the next two weeks when our next appointment was – we needed prayer, and we needed God.  So we poured ourselves into Christmas in an attempt to push the emotions aside until later.

Christmas came and went, and we had our next appointment scheduled for January 2nd.  We asked everyone…ANYONE…to please pray for a miracle.  We wanted a miracle so bad we could taste it.

The day of the appointment, my mom, dad, and mother-in-law all went with us, and it felt so good to have that support by our side when we walked into the ultrasound room to look at our little girl.  By this time, I knew the routine – pull up my shirt, put on the goop, watch the screen…and watch the face of the tech.  Hoping that just maybe her reaction would give a feel for what is going on.  But she was stone faced.  About 45 minutes went by, and she finally finished all that she needed to do.  The doctor walked in, sat down, and looked over the results.  He proceeded to tell us that he thinks Brynn has Aortic Coarctation which is basically where some of the blood isn’t flowing like it should.  He was very kind and willing to answer all of the questions we had as he spoke.  He reassured us that this heart defect is treatable, and he has several patients with this same CHD who have gone on to live normal, healthy lives.  I was so incredibly relieved to know that the HLHS was only a misdiagnosis.  We got our miracle!

The doctor still wanted us to go see a fetal cardiologist down in the medical center to have a fetal echocardiogram done just to check on the Aortic Coarctation.  Better to be safe than sorry and more prepared he assured us, and off we went with so much weight off our shoulders and tears of happiness rather than devastation.

But that all changed on January 15th when we went for our echocardiogram.  The tech took about an hour to look at Brynn’s heart and make notes before the pediatric cardiologist came in.  She sat down and immediately began looking at her heart even more.  After about 15 minutes, I was so relaxed and confident in knowing that everything will be just fine.  Then, I heard the doctor say to the tech, “Okay, so this valve measures what?  Okay, write down Hypoplastic…”  I jerked up and asked her to clarify what she just said.  It was then that she picked up a pen and paper, drew a picture of my Brynn’s heart, and explained that it looks like she has HLHS and that there needs to be growth int he mitral valve for things to look better.  All I could do was think breathe, breathe, breathe…  But I couldn’t catch my breath.  I couldn’t move.  I couldn’t do anything.  Then it hit me.  That gut wrenching, bottom of your stomach whole body cry.  I don’t think I have ever cried so hard, so loud in my entire life.

My husband was amazing.  He got up from the chair, grabbed me, and didn’t let go.  I knew he was just as heartbroken as I was, but he only worried about me.  God really gave me the most perfect partner in life when he gave me Chase.  This news was total shock to us.  We thought we were in the clear for HLHS, but now we were not.  Again, I started pleading with God, “Lord please, this can’t be.  You were supposed to work a miracle.  We were told something different just two weeks ago.  Why God, why???”

I cried for a good 15 minutes.  {I think cry is an understatement.  I was in full blown hysterics.}  And in the midst of it, the cardiologist asked if we had any questions.  Of course we had questions.  We had a million.  But I couldn’t even force my mouth to take shape and to speak.  I was numb again.

My husband and I had lost the hope that we had clung to and were once again devastated and thinking the worst.  But we kept our belief in our mighty God and decided to get a second opinion thanks to two amazing women that quickly became angels in my life – Meagan and Lindsey with Texas Children’s Hospital.  And thank God we did!  From there, we gained a whole new team of doctors – cardiologists, neonatologists, and an OB/GYN for me.  It was there that we also met our AMAZING heart surgeon Dr. Heinle.  He was wonderful, kind, and compasssionate, and he genuinely cares about each of his patients.  Along with Mary Tran {his PA}, they gave us so much hope, and they were so informative while also being kind.  We knew God had put us right where he wanted us!

Brynn was born May 13, 2013 weighing 9lbs 3.2oz.  The birth was definitely eventful, but wonderful nonetheless!  She was quickly taken away by the neonatologist team to the NICU and was later transferred to the CVICU {Cardio Vascular Intensive Care Unit}.

Brynn had her first open heart surgery on May 21, 2013 at just 8 days old.  They did a coarctation repair  of her aorta…because Brynn did NOT have HLHS!  Praise God!  She has a variant of HLHS called Shones Variant.  This means that the left side of her heart is smaller than the right, but it functions.

We know that without God and Texas Children’s, things would have been very different for her.  She is followed VERY closely, but does really well.  Since then, she has had two stomach surgeries as well.  The first to add a colostomy bag and the second to remove it.  As with her heart surgery, we were blessed with phenomenal surgeons and doctors who took wonderful care of her.  Everyone there is truly amazing and became like a second family to us.  After all, they are the only ones that know just exactly what we have been through.

We have set up a Facebook page called Brynn’s Faithful Heart to bring awareness and help as many families as possible in any way that we can.  We lift all heart babies up in prayer, and we ask that you do the same as our journey is far from over and we may be having more surgeries in the future too.  Thank you!

Today Houston Moms Blog is dedicated to spreading awareness about congenital heart defects.  Please join us as inspirational local moms share the journeys of themselves and their little ones all throughout the day.  Our hope is that through this series, we can shed some light on CHDs and that these courageous fighters will become the voice of heart defects here in Houston.  Read more on this blog post.

[hr] About Kellie K.

Kellie is a wife, mother, and advocate of spreading awareness about congenital heart defects.  Follow along with her daughter’s journey on the Facebook group she created, Brynn’s Faithful Heart.