COTA for Olivia

Our Story

Olivia’s New Heart

“Clean out your Guinea pig cage” I call to Olivia as we get ready for bed. “I’m still doing my homework and playing Roblox” she yells back. How do you do homework and play roblox I wonder?

Just a normal evening for a 7th grader here in Hernando, Mississippi. The only thing unique about this 7th grader is she is in complete heart failure and needs a heart transplant.

Olivia was born to be a fighter. She was born to stand out. She was born to be different. She was born to be our daughter. And none of those things would come easily.

Olivia was born in Hunan, China, on a cold January night in 2010. She was left on the stairs of a cell phone store in a box with a can of milk, a blanket and an umbilical cord still attached. She was blue but no one would really know why for quite some time.

Olivia defied the odds in an unbelievable way. She was taken in by a beautiful Australian couple and nursed to a healthy weight. She was then returned to the orphanage where she entered a special section called ICC which stands for International China Concern where she had access to medical care that ultimately saved her life.

Olivia was taken to Shanghai Children’s Medical by a devoted caregiver to have her very first heart surgery. This would preserve her life. Little did they know just how complex her heart disease truly was.

On the other side of the world, Danny and I were starting the adoption process. Dreaming of a little girl God had created to be our very own. We had never struggled with infertility-we just knew God had ordained adoption for our family. We desired our child with everything within us. Olivia was the first file we received.

It would be 3 months before we realized how complex her heart disease truly was. Upon finding out, I remember feeling frozen. We couldn’t move forward-for complete and utter fear. And we couldn’t dare go back. How do you ask God for a better model when he’s given you a precious child to love forever?

We were scared to death. We pressed forward out of pure love and faith. We knew we already loved this little girl. We were more determined than ever to get to her.

On March 28th, 2011,-we became parents to a very small 12 pound 1-year-old. Olivia had not a tooth to her name and couldn’t hold her head up. She was for all purposes a 3-month-old.

When we had our first doctor’s appointment, they told us something was wrong with her. They didn’t know what, but that something was definitely wrong. We were indeed more terrified than ever.

Soon, we moved to Philadelphia for work. There, they had a center of excellence children’s hospital that specialized in congenital heart defects like Olivia’s.

Olivia’s diagnosis is single ventricle right heart syndrome complicated by heterotaxy syndrome. This means the right half of her heart did not fully develop and some of her body organs are either missing or in different locations in her body.

CHOP, Children’s Hospital of Philadelphia, performed Olivia’s 2nd heart surgery – the first at home in the United States – the Fontan procedure.

Soon, I gave birth to Olivia’s little sister, Elle.

We had 2 little girls and the world seemed perfect.

Olivia had a couple of other surgeries non-heart-related and did very well. We made a couple of moves for our family that included moving back to Mississippi.

During our time back in MS, we came across another little girl in China with a severe heart condition that had gone untreated. She was now 3 years old and had severe pulmonary hypertension. We made it to her in 3 months with a medically expedited adoption. This was ONLY possible because of Boston Children’s Hospital helping us after other centers refused her file.

In late March 2015, I took 2 red eye flights from China landing in Boston where AnaLei, Olivia’s now 2nd little sister, would meet her daddy … the same day as her cardiology team.

I include this in Olivia’s story because it was this that led us to Boston Children’s Hospital for the remainder of Olivia’s cardiac care.

Once we were under Boston’s care, they realized that Olivia was a candidate for the bi-ventricular repair surgery. This would be a surgical option that could lead to better long-term outcomes for Olivia than the Fontan and help her heart function more like a normal heart.

In 2017, Olivia underwent a 14-hour surgery which was a complex Fontan take down into a bi-ventricular repair.

This surgery was ultimately complicated by a pacemaker as Olivia went into complete heart block.

The bi-v surgery was a great success, other than the pacemaker. Olivia was 7 years old and we were thrilled with the outcome. The Lord had led us to Boston – at the time we were even living there for work – and we knew it was all in His timing.

Soon, we moved again for work. We had 3 girls and life was as it should be.

However, one day, I was looking at Facebook on a China waiting child’s site and came across a little boy with almost the exact heart diagnosis as Olivia! They were having trouble finding him a family. So, I commented and encouraged families to please consider adopting this little guy because with the right medical care and treatment in the United States, I was sure he could live a normal life, just as we were doing with Olivia!

Well, you guessed it! Haha! Not long after, we brought home Jayden – our 4th and FINAL addition to the Mann family!

Jayden went on to also have a very successful bi-ventricular repair at Boston Children’s as well. His was not complicated by a pacemaker thus far, for which we are thankful.

The pacemaker Olivia had to get has unfortunately been a continuous issue to her left heart dysfunction. No matter where they place the lead, it seemingly causes an issue. Over time, it has continued to worsen.

This, over time, has led to the need for Olivia’s heart transplant. Her sweet heart has given it all that it has.

Living daily with heart failure

Olivia does amazing getting ready for school just like her siblings. She is ready to walk out the door by 7am most mornings – but not before swallowing her roughly 13 medications.

Just walking from the kitchen to the bathroom is truly a workout for her. She has to breathe deeply and stop to take deep breaths. She will say “mom my legs”. It takes her longer than the others to get ready simply because she has to take breaks to stop and breathe.

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What seems like a simple trip to the bathroom for you and I is like running a marathon for a patient in heart failure.

Olivia refuses to be seen as different. She refuses to be seen as someone who needs help. We’ve begged her to use a golf cart or something of the sort at school to travel between buildings and she simply refuses. She wouldn’t dare. Only this year will she even entertain taking the school elevator as her sweet body can no longer handle stairs. Walking between classes is genuinely very difficult.

Some days between classes, Olivia must stop to throw up. She doesn’t cry and she doesn’t stop. She just throws up, wipes it up and goes to class. Why? Because she is one tough little girl.

Olivia tends to throw up more while in heart failure because the body is an amazing thing! When the body has a limited amount of oxygen, it knows to direct that oxygen to the most important organs, of which the stomach is not. Therefore, digestion just isn’t a priority. Add on top of that having severe acid reflux and heterotaxy, where you are predisposed to GI issues as it is, and it’s a recipe for daily sickness. Olivia has dealt with this all of her life.

Thank you for reading about Olivia’s journey.

Now, let me tell you a little about why we have come to you through this platform.

We have partnered with COTA, Children’s Organ Transplant Association, for many reasons!

First, and most importantly, all donations made in honor of Olivia are tax deductible to the fullest extent of the law and COTA funds are available to assist Olivia with transplant related expenses for her lifetime! Also, 100% of funds raised assist with transplant-related expenses! COTA is a nonprofit organization and does not charge a fee.

Finally, there is peace of mind because all donations given MUST be used for transplant-related expenses. So, you know exactly where your donation is going and how it is being used.

Danny and I have been told and prepared that the costs during and post-transplant are overwhelming. Therefore, we come to you as a community now. The costs currently even in heart failure alone with insurance is almost more than any one family can handle. Please consider donating to COTA for Olivia.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.