February is all things HEARTS!

February is American Heart Month which reminds us to take care of our hearts and consider potential risk factors. The week of February 7th through the 14th is  recognized specifically as Congenital Heart Defect Awareness Week!  For many of our families this is a special and often hard reminder of one of the health conditions a baby with Down syndrome can be born with.  According to the National Down Syndrome Society approximately half of all babies born with Down syndrome are born with a heart defect. Continue reading the story of a GiGi’s Playhouse Wausau family and their journey through diagnosis and repair of Morgan’s little heart…

In October 2017, we found out that our daughter Morgan would likely have Down syndrome when a large hole in her heart was detected during the 20-week ultrasound.  We found out from a cardiologist that she had a Complete Unbalanced AV Canal, this meant that she had a hole between all 4 chambers of her heart and her right ventricle was smaller than the left.  At that time, we were told that we should consider terminating the pregnancy because this type of defect could result in her having a single ventricle repair of her heart and that coupled with Down syndrome would mean a very hard road ahead for our little one.  We immediately told the doctor that we would not terminate the pregnancy and that we would love our little girl no matter what.  We relied on our faith that God had big things in store for Morgan and we have seen that come to reality throughout her life.

On February 21^st, 2018, our Morgan was born in Marshfield and she spent 3 days in the NICU and came home on a Billy blanket due to some issues she was having with jaundice.  We spent the first 3 months of her life feeding her every 3 hours with fortified feedings trying to get her to gain weight so that she would be ready when she needed to have her first surgery.

At 3 months old she stopped gaining weight and we made our first trip to Children’s Hospital in Milwaukee.  We went down there not knowing if she was having the full repair or not.  They told us that at this time they were going to put a band on her pulmonary artery as she also had a PDA which is a duct that didn’t close properly after birth and this was pouring blood into her lungs.  By banding her pulmonary artery they were going to give her more time to grow before they would do her full repair.  So at just a little over 9 lbs we handed our little peanut to the doctors to perform her first open heart surgery.  Things went well with this surgery and she spent 6 days in the hospital and we were able to come home and let her grow.

We spent the next 10 months getting her to grow and on March 21^st 2019 (World Down Syndrome Day), we got a call that she would be having her next surgery a couple of weeks later.  After a day of pre-op tests, we finally had reached the day where the surgeon would repair the hole in Morgan’s heart.  Despite the fact that Morgan’s right ventricle was smaller than the left, the surgeon was able to do a two ventricle repair.  The surgery went well however, Morgan did have a complication and ended up with heart block which is a disruption in the electrical connection in the heart from damage or bruising from the surgery.  For this Morgan needed an external pacemaker.  God in miraculous fashion healed her heart block and after nearly 2 weeks in the hospital we were able to go home.

Since her surgery Morgan has continued to grow and thrive.  Morgan is now a healthy and active 3-year-old.  She is a people person and says “hi” to everyone she meets.  She started attending school in March of 2021 and has been learning to communicate with both sign language and verbally.  She loves so fiercely and unconditionally.  I am so blessed to get to be her mom and see her become all God created her to be!