Harper, 14 months old

 

My name is Harper.

I am 14 months old.

I am Imperfectly Perfect.

At our 20 week sono we learned that Harper has a vascular ring, we were told the doctors in my practice have never actually seen that before and referred me to MFM and genetic counseling. They also made sure to mention the cut off day to “decide” if I wanted to keep the baby! The next few weeks were filled with tears , Doctor’s appts, an amniocentesis , countless tests and finally the decision that there was no decision, I would continue the pregnancy and deal with anything that came our way!

When Harper was born (we didn’t know she was a girl)! We were so excited but also terrified! The next 2 months were again filled with sedated exams , testing, results, countless doctors. Her final diagnosis was a right sided aortic arch with a vascular ring, a kommerell diverticulum and a left aberrant subclavian artery. Even though i knew we were considered “lucky” versus so many other diagnosis we could have had, my world felt like it was ending. at a little over 2 months old  Harper has her first heart surgery to separate the vascular ring and pin back her aorta to make more space for her esophagus and trachea to reduce some compression. We had some complications at the hospital but it all turned out well and we now have a “healthy” 14 month old!

We don’t know what the future will hold for Harper , if she needs another surgery down the line it would be much more risky because it would involve removing a growth on her aorta (the kommerell diverticulum) as well as rerouting her subclavian artery to her carotid artery. Most doctors are not comfortable with this surgery and we were advised to not do it that way for the first surgery because it’s much more dangerous and will effect her through her adult years! So now we just enjoy everyday with her and pray we are done with heart surgeries and that we continue to get positive feedback from her cardiologist! Harper has been slightly delayed in all of her milestones which could be from the surgery, but other then that all is well for now , (not that we don’t panic with any abnormal noise she makes or anytime she’s not 100% feeling great)!

I have learned so much from this journey so far. I have amazed myself and others around me how strong I can be when I had no choice, CHD becomes your life and you have to be strong for your children! They need you to be there for them! I also learned to be thankful and not angry,. For along time I felt angry and wondered “why me”..: and it’s cliché but it’s me because I can handle it and I can and will love my daughter unconditionally and help her grow! I also learned that this journey will quite obviously show you who is there for you and who is not! We’ve had so much love and support from unexpected places and we’re sadly disappointed with some people not understanding or just pushing off harpers diagnosis because she “looks” and “acts” fine.

Lastly I learned to be more empathetic with people. You never truly know what someone is going through at home and I try to give people the benefit of the doubt when they are having a rough day or aren’t nice. I kept harpers diagnosis to my immediate family for a very very long time and internalized all of my pain and fear, and you never know what someone is dealing with!

Now I am finally comfortable to open up with my journey so I can hopefully help Others! I am so blessed for all of the CHD parents I have met and befriended! They make the difficult days easier and I hope by sharing my story I can help another parent!

 

Written by Mom, Jackie

February 2019