One Special Heart: The journey of a loving couple and their 2nd child - a simple life complicated by congenital heart defects.

Once upon a time there was a young woman and a young man who fell in love and got married.  They dreamed of having a family of their own some day.  After numerous doctor appointments, they were told that conceiving a child naturally would not be in their cards.  The young woman’s dreams were instantly crushed.  After some testing and with some help, they were able to conceive.  The young woman truly believes through the help of her grandfather, as he passed 24 hours after they got their results, that was the reason why they were able to get pregnant without invasive procedures.  As one life leaves, another one begins…

Fast forward to July 4, 2010, the couple gave birth to their beautiful and healthy son, Zander Edward Reyes.  The couple decided to name him after both of their grandfathers.  Once Zander hit his 6 month milestone, the couple began discussing the possibility of trying for a sibling for Zander.  The young woman was worried that they would never be able to conceive again.  But to their dismay, without even really trying, on June 14^th, they found out they were pregnant!

During the first and second trimester, the young woman endured a lot of morning sickness, to the point she wasn’t gaining weight.  Throwing up religiously every morning, was gruel some, but the young woman knew that this was a good thing, a healthy baby was growing inside of her.  On October 5, 2011, the couple went in for their routine 20 week level II ultrasound and gender reveal.  They found out they were having a girl!  After over an hour, the ultrasound tech was still focusing on the heart.  The third ultrasound tech/supervisor came in and the couple began to get nervous, when they looked at the couple and said “there’s something wrong with her heart”, the young woman began to tear up and shake….and this is where Zoë’s journey began…

Mike and I knew something was wrong, especially since this was our 2^nd time doing this.  The ultrasound techs don’t converse with you to begin with, so when they turn to you with a solemn look on their face, you know something was wrong.  We were sent to a fetal cardiologist for their opinion.  To our dismay, we found out that our little Zoë has an enlarged pulmonary chamber and a small aorta chamber.  The cardiologist could not get the proper shots since she was moving all over the place (I should have avoided the caffeine in the morning).  So with that, she overloaded us with the “possibilities and worse case scenarios”.  One being that she may have chromosomal defects and second being that there are holes.  She wanted us to come back in 2 weeks for a second echo.  

As Mike would call me, “Dr. Google”, the internet has become my best and worst friend.  I’ve become knowledgeable on the heart defects but also comparing myself to other women who are going through similar and yet different situations.  How can you not research?  I’m completely neurotic and Type A.  Thank God for Mike, who is laid back, optimistic and sees the glass have full.  I guess that’s why we work. 

After many sleepless nights, I have come to realize that genetic defects aren’t hereditary, its just by chance.  So even if Down Syndrome, Trisomy 18, Turners, etc. isn’t in our blood lines, it doesn’t matter.  So on top of worrying whether her heart will be ok, I now have to worry if she’ll be ok on the outside and developmentally.

Yesterday, October 17^th, we had our 2^nd fetal echo.  I decided to see another cardiologist, just for another pair of eyes.  She’s still through Children’s Memorial.  She had better bedside manner and was more personal, and answers all our questions and tried to give us hope.  The ultrasound was going well, until she dropped the bomb on us “I do see a heart, she does have VSD” (Ventricular Septal Defect: Before a baby is born, the right and left ventricles of its heart are not separate. As the fetus grows, a wall forms to separate these two ventricles. If the wall does not completely form, a hole remains. This hole is known as a ventricular septal defect, or a VSD.

Ventricular septal defect is one of the most common congenital heart defects. The baby may have no symptoms, and the hole can eventually close as the wall continues to grow after birth. If the hole is large, too much blood will be pumped to the lungs, leading to heart failure. The cause of VSD is not yet known. This defect often occurs along with other congenital heart defects. In adults, ventricular septal defects are a rare but serious complication of heart attacks. These holes are related to heart attacks and do not result from a birth defect.

In addition to seeing the hole, the cardiologist also saw a left IVC (inferior vena cana).  Its very hard to understand medically, but basically she has a vessel that is not going into the right chamber.  Its re-routed to the upper chamber.  All the blood flow is going where its supposed to, just anatomically, her heart is not normal.  She also has a 4^th vessel on her upper right chamber, instead of three.  The cardiologist discussed that this could be Heterotaxy Syndrome. 

Heterotaxy syndrome is a disorder that results in certain organs forming on the opposite side of the body. For example, instead of the heart normally forming on the left side of the chest, it will be located on the right side. Heterotaxy has been known to affect the development of the heart, liver, lungs, intestines, and spleen. Babies with Heterotaxy syndrome are usually first identified because they have structural problems with their hearts or livers.

After discussing Heterotaxy Syndrome with the cardiologist today, she advised me that they are worried that little Zoë may have this, because of the weird placement of her vessels.  Zoë’s stomach is in the right place, and her liver is as well.  Ultrasounds do not pick up the spleen, so they have to watch out for that after birth to see if she has a spleen.  They also have to see if her intentines are twisted.  There is a chance that she just has weird placement, but they have to really watch me and Zoë to make sure her organs are in the right spot after birth.   Basically little Zoë is high risk right now. 

They are also worried about her aorta chamber, as its smaller then the pulmonary chamber.  They have to monitor it to make sure its growing properly.  If its not, they possibly may have to take a balloon to it after birth to help widen it. 

My father has best described our news “It’s a crapshoot”.  We really don’t know anything further then anatomically her heart isn’t “normal” and she does have a hole.  However, we really won’t know anything until after birth. 

Could these all just be isolated heart defects?  Yes.  Could she lead a normal life?  Most definitely.  Could she have a chromosomal defect?  Possibly.  Will she need surgery?  Maybe.  Right now, we know nothing further until the day she’s born.

A few people have asked whether I will deliver vaginally or via C-section.  All doctors thus far have said vaginally.  You would think otherwise, but they prefer vaginally.  Depending on what her ultrasound says after birth, that will determine if she stays at Northwestern or if she will be transferred to Children’s. 

It was devastating to learn about our daughter's heart defects.  I feel unable to feel happiness or plan for the birth of my child.  The world has come to a stop.   I’m fearful of buying anything pink.   I have became angry and bitter, and asked "why me", "why us", "why my daughter?" “why can’t we ever catch a break” I have become angry at so many people who innocently complain of their child's teething or worried about an ear ache, or what words their children aren’t saying or hoping for a specific gender.  I thought they just didn't realize how lucky they were that those things were ALL they had to worry about.    As strange as it may sound, I am grieving...grieving the loss of a healthy child, grieving the loss of my expectations as a mother, grieving the loss of dreams for my child's abilities and future.  I have come to terms with the unknowns and realize that this may be a bumpy road ahead.  I truly believe God has a plan for Zoë and a plan for us.  Maybe God picked Mike and I because he feels we are strong and truly love to the fullest and knows we can overcome anything.  Nothing in life is guaranteed.  No one has the golden ticket to live to a 100.  We have to hope for the best, continue to stay positive.  What have I learned thus far?  Never take 1 day for granted.  Love to the fullest.

I truly look forward to hearing her first cries, her first giggles and her first milestones.  I know she’s a strong little girl.  We picked out her name for a few reasons, but the main reason is the meaning behind her name.

Zoë: means Life

Fiona: White, Fair (we just love this name)

Grace: Gift from God

So little Zoë Fiona-Grace, we can’t wait to meet you, no matter what complications you may have. 

We thank you from the bottom of your hearts for being there for us.  Whether just extending an email saying you’re praying for us, a telephone call, etc.  Its truly amazing how many people love us.  We’re very blessed to have supportive families and extremely good friends. 

I think by using this blog, this will help me “grieve” and talk about what is going on with our little girl, and hopefully, make me feel better.   I figured this would be a good way for our friends and family to be updated on our progress (and Zoë’s) while she’s still growing and after birth.  And this way I don’t have to send a multitude of emails, I can just keep a blog and have people follow it if they want.  So either bookmark this site or asked to be a “follower” so you can get updates.  I will be monitored quite a bit…

With that, I will leave you with this beautiful poem:

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared.

He asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

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