A Mother’s Raw & Emotional Story: Giving Birth to a child with CHD


As many of you know February is National Heart Month, in fact this February marks the 56th consecutive American Heart Month. The first proclamation was issued by President Lyndon B. Johnson in February 1964, nine years after he had a heart attack. The federally designated event reinforces the importance of heart health since heart disease is the #1 killer of Americans.  It also addresses the need for more research, with a reminder to get families, friends and communities involved. (Source: https://www.heart.org/en/around-the-aha/february-marks-56th-consecutive-american-heart-month )

Heart disease seems to touch everyone in some way….some of my earliest memories as a child were of my mother crying over her mother’s deteriorating health. My grandmother was always in and out of the hospital due to complications with type II diabetes leading ultimately to bypass surgery, kidney dialysis and eventually passing away from complications with congestive heart failure at the young age of 63. Thus, most of my childhood, and early adulthood I had always associated Heart Disease with older individuals. That is until my amazing friend, Mary, whom after waiting years for a second child, found out she was expecting a baby girl. Mary was over the moon in love with her sweet baby girl before she was even born, you could practically see the beams of joy exuding from her face.  What happened next was a shock, but it’s not my story to tell, it is Mary. Mary was kind enough to share her story with us…you might want to grab a Kleenex or two.

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I sit and write to you after reading multiple other stories of moms and kids with Congenital Heart Disease (CHD) and realize, this is hard…

I don’t want to tell the whole story because it makes me cry just thinking of it. It was a very hard time.

I will write what I can…

My daughter was, what I thought, a normal pregnancy.  I was 36 years old, which in medical terms is not normal, it is deemed advanced maternal age and therefore more risks.  We knew there were some risks at that, but I was sure God would make everything ok.  He had brought me through a 4 week premature baby with no problems, so I was sure God would take care of getting through this pregnancy.  There was no mention of Congenital Heart Disease (CHD) by the doctor, and only a small blurb on it in 1 out of 3 of the pregnancy books I read.

Well the pregnancy went ok and her due date came and went.  The next day I had a dr. appointment and they said I was having contractions but sent me home to rest until they felt consistent.  Later that night we went into the hospital to have our baby girl. Little did I know what would come next!

After giving birth, my baby girl was having trouble keeping her temp up, and afterwards when they thought she was fine I was allowed to try nursing her.  Well, as I tried I noticed her hands and feet were purple.  I asked the nurses and they said it was ok.  We finally were heading to the postpartum room and stopped to give her to the nurse for a bath.  After that, I was unable to hold my baby for a week.

I remember getting some sleep but waking up feeling like I needed to nurse my baby and could not get a hold of anyone to find out where my baby was.  They said to get some sleep and the next thing I remember was a cardiologist in my room telling me my baby’s heart was not right and she is in the NICU but will need to be sent to University of Michigan for open heart surgery.  She was diagnosed with Partial A.P.V.R. but after arriving at Uof M, was diagnosed with Total Anomolus Pulmonary Veinus Return.

At 27 hours old, after giving consent over the phone, my daughter’s heart was surgically altered.  The surgery lasted 5 or 6 hours.  We were finally allowed to see her and walked into the room with my daughter’s chest wide open with a film covering it.  You could see her heart beating through it.

Crying hard now so moving on….

I did not know anything about Congenital Heart Disease (CHD) so I started to promote CHD Awareness with a photo project of other kids and families.  I started it after Shelby, my baby girl, had her 2nd OHS to remove scar tissue to open the hole in her heart.  Each year in January I take photos and tell some of their CHD stories.

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Please take the time to checkout Mary’s photo’s that bring awareness to CHD & be sure to follow her page where she offers beautiful family photo package opportunities with a percentage of it going back to CHD awareness through the end of February for any full session book for March and/or April

Facebook: Frosted Designs 

Website: Frosted Designs by Mary Frost Co

Instagram: Frosted Designs 

Additional resources Mary recommends include,

Conqueringchd.org

Heart.org

Mendedhearts.org

A huge thank you and virtual hugs goes out to Mary for having the courage to share such a raw and emotional time in her life with us in an effort to bring awareness to CHD.

If you have any comments or questions for Mary or perhaps have a story you would like to share comment below.

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