OUR STORY

It all started with her 20-week ultrasound.  My husband and I woke up that morning thrilled to see our sweet baby girl.  We were halfway through our pregnancy and were counting down the days for Lakyn’s arrival.  Shortly into our appointment we became concerned.  Our ultrasound tech was quiet and focused, not the usual joyful manner as our past appointments.  She said she would be back with the doctor to explain.  Our hearts sank.  The doctor came in and explained that they were not seeing proper blood flow in Lakyn’s heart.  She quickly told us not to be too concerned yet, that they were sending us to maternal fetal medicine where they could take a more in-depth look at her heart with better equipment. We waited 2 long weeks for that appointment.  We focused on staying positive and clung to the words “don’t be concerned yet, it could be nothing”. 

Finally, our appointment day arrived, and the news was not good.  Our maternal fetal medicine doctor explained that Lakyn did have a heart defect, but they were not able to diagnose which one specifically. We had an appointment at Rocky Mountain Hospital for Children the following morning.  She said that we would know more after our appointment with the pediatric cardiologist at Rocky Mountain Hospital for Children.  Again, we were trying not to be completely devastated and to stay positive until we had all of the information.  The following morning, we met with Lakyn’s cardiologist.  After a brief ultrasound, he confirmed Lakyn’s heart defect, Pulmonary Atresia with Ventricular Septal Defect.  He then added that this heart defect is commonly caused by 22q, also known as DiGeorge Syndrome. 22q is a chromosomal disorder that can cause poor development in several body systems. He gave us the option to have Lakyn tested in utero by amniocentesis.  He went on the explain that Lakyn would need at least 1 open heart surgery in the first week of her life and would need more throughout.  We left that appointment completely heartbroken, but sure of one thing, we would be strong and do everything we could to give our girl the best life.

 

A lot happened in the next few weeks, so I will briefly cover the next steps.  We did follow through with amniocentisis testing for 22q, which did come back positive.  We took the bad news as it came and remained faithful and strong.  We became experts on Lakyn’s diagnosis.  We became familiar with surgeries and procedures.  We took classes to prepare us for NICU life the best we could.  We met with doctors and surgeons. We had lengthy consultations with our genetic counselor about 22q and how it would affect her life.  We were determined to know it all, so we could navigate Lakyn’s journey with the best outcomes.  She was worth it and she would have the best.
 

After feeling a normalcy we hadn’t in weeks, we settled in with what our new life was going to look like.  We had Lakyn’s open heart surgery planned, our stay at Ronald McDonald House planned, and what it would look like bringing Lakyn home.  We were ready. 
 

Then unexpectedly, on October 10th at 29 weeks pregnant, my water ruptured.  Flight for Life flew me to Rocky Mountain Hospital for Children in Denver.  It was important that Lakyn was born there so she could receive Prostaglandin right after birth to keep the hole in her heart open.  Lakyn was born quickly after landing.  She weighed 3 pounds and 3 ounces.  She was 11 ½ weeks premature.  She was beautiful and she was fragile. 
 

Everything we had just planned and prepared for fell to the wayside.  Lakyn was too small to undergo surgery.  We were now looking at a much lengthier stay in the NICU.  Moving forward we would wait for Lakyn to grow big enough and well enough to undergo open heart surgery. 
 

After a few weeks in the NICU Lakyn made small strides and we celebrated every single one of them.  We were inching closer to surgery, which meant getting closer to bringing her home. We cherished these precious moments. Lakyn was strong and she was a fighter.  To put things in perspective, she was born11 weeks premature with a heart defect, and 22q.  Our tiny girl was putting up a big fight.  At this point Lakyn had already had minor pick surgery and had many blood transfusions.  She was defying the odds and making progress one small step at a time. 
 

We spent the days reading at her bedside, holding her, and helping her through interventions.  We were now coming up on Thanksgiving, and Christmas was around the corner.  Layn’s surgery was finally scheduled for early December, which meant she could be home by Christmas.  I had my heart set on that day!
 

As the days went by, we watched Lakyn begin to struggle.  She needed to be intubated again, which was a huge red flag.  Lakyn’s pediatric cardiologist scheduled her to go to the cath lab to take a better look at her heart.  Lakyn’s heart defect was even more broken than the original ultra sound was able to show. Lakyn only had one MAPCA going from her heart to her lungs. MAPCA’s are the arteries that develop to supply blood to the lungs when pulmonary circulation is underdeveloped.  This would mean her heart was inoperable and she would need a heart transplant. 

At this point, we realized losing her was becoming all too real, but we hung on to what little hope we had.  After further testing we would learn that the 22q had also affected her lungs, she only had one bronchial tube.  Now, Lakyn was looking at a heart and lung transplant. This was an impossible task, there was nothing more the doctors could do to save her. We had lost all hope. We spent the next few hours cherishing every second we had with her. 

Lakyn passed away peacefully on Thanksgiving Day in our arms surrounded by so much love.  We had our girl for 45 blessed days.  We feel so lucky to have been chosen to be her parents.  We think of her in everything that we do and look forward to the day we can embrace her again.

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