Friday, February 3, 2012

Owen's Story Revised

I will never forget the day of our 21 week ultrasound.  We had a perfect 18 week ultrasound and knew we were having a baby boy.  We were told by our OB that everything was great but they wanted more pictures. We were so excited to see our baby boy on that screen again and wanted to see his little face in 3d.  We could have never imagined what would transpire that day.  The doctor walked in and told us our son had a congenital heart defect, Hypoplastic Left Heart, and that we had one week to decide to terminate.  He told us that he would have a horrible quality of life.  He told us that we are a young couple and can always try again.  What he didn't know is that we had suffered with secondary infertility for 7 long years due to my PCOS.  He also didn't know that there was no question that we were giving our baby boy a fighting chance.

I spent the next weeks crying, searching for answers, trying to find Hope.  There were no heart groups on facebook, no local support groups, and we felt we were in this fight alone.  It was then that a neighbor dropped by to drop off some cookies and introduce herself.  I broke down and told her about our baby's diagnosis.  It was then that she said her nephew also had HLHS, that he is three and thriving.  In that moment I felt a huge sense of relief and HOPE.

Owen was born in January 2008 via Csection.  I delivered at the hospital closest to the children's hospital that he would be transported to.  We had a plan, but nothing could have prepared us for the whirlwind of that first week.  We met more doctors, nurses, therapists and learned more medical terms that I never wanted to know.  Owen looked so fantastic and perfectly healthy on the outside, it was hard to imagine his heart was broken on the inside. 

Owen was born with Hypoplastic Left Heart Syndrome, or half a heart.  Our option was a series of a three staged palliative surgery.  I suppose we had the option to take him home and pass comfortably, but that was not even considered.   Even with his surgeries, his heart would still be broken as there is no way to replace a missing ventricle.

On Owen's one week birthday, he underwent his first open heart surgery, the Norwood. There are no words to describe the heartache of sending our newborn son to the operating room, not knowing if we'd ever hold him again. We paced the waiting room for 7 LONG hours waiting to hear that he was okay.
Owen recovered quickly from his first surgery. He was considered "FRAGILE", but after spending his first 30 days in ICU, he came home with seven medications and an NG tube for feeding.

We took him in for a heart catherization the last week of March 2008 to find that he was in heart failure. His heart function was decreasing, his tricuspid valve was moderately leaking and his heart was working overtime. Owen was admitted to ICU and placed on Milrinone to strengthen his heart and prepare him for his second open heart surgery, the Glenn. One week later, we felt he was ready and he went back for surgery two. We were scared breathless when the doctors didn't know if he'd make it out of this surgery. He was weak, his oxygen saturations were low and he had a hard time coming out of the OR. His sternum and skin were left open this time in case they had to get in an emergency. Thankfully, he had a major turnaround during those first 24 hours and was on his way to recovery.
Owen spent another 30 days in ICU until he was ready to come home again.
Owen remained in a "fragile" state after his Glenn. His tricuspid valve regurgitation is still moderately leaky and he has some narrowing in his arteries due to built up scar tissue. On June 4th, he was back in ICU for another cardiac catherization to balloon open his narrowing and coil off excess collaterals.
This helped for a while, but he was back in ICU on October 15th for more coiling of collaterals and ballooning of his arteries. During this 6 hour procedure, they determined his heart continues to fail. His function is decreasing, his tricuspid valve is leaking more and his pressures are high. His surgeon sat us down and explained there is nothing more they can do for Owen's heart.
Owen will need a heart transplant! Nothing could have prepared us for our next journey ahead. Arizona doesn't have a pediatric heart transplant facility, so we would need to research and relocate. We visited UCLA in December and Owen had his first transplant evaluation. We sat back and waited for all the test results to come back. It was a LONG four weeks of waiting.

The news wasn't good. Owen has extremely sensitized antibodies built up against many common antigens. This will make it very difficult to find him a heart, and he is considered high risk for rejection. In January 2009, we started pre-treating Owen's antibodies with IVIG (immunoglobulin) and Rituximab (chemotherapy). He was hospitalized on four separate occasions to receive his treatments. After four weeks of treatment... we drew his labs.




Once again, we waited four long weeks to get the details of his antibody results. All of the treatments failed. Owen's antibodies didn't budge. Since Owen is now considered high risk and did not respond to his first treatment, we've decided to look at other transplant centers that have experience and knowledge in working with antibodies in transplant patients.
I called every pediatric transplant center in the nation and spoke with their transplant teams. Of all the wonderful hospitals to choose from, we chose Lucile Packard Children's at Stanford as Owen's transplant hospital. Owen is currently being treated for heart failure. He is fed 100% by tube, he is on 7 medications, 1/2 liter of oxygen and he tires easily. Owen has PT, OT, Speech and Feeding Therapy weekly and is catching up in all areas of development. We visit our local cardiologist every four weeks and travel to Stanford every six months. Owen is monitored very closely and when the transplant team at Stanford feels it is time, we will get him listed for his new, perfect heart!
It's a miracle, but we received news from Stanford that Owen qualifies for a Tricuspid Valve repair/replacement. If this operation is successful, he would possibly be a candidate for a fourth open heart surgery, the Fontan. This news was huge and such a blessing. The longer we can keep his heart strong, the longer we can postpone a heart transplant. 

In December 2010, we were told that since he's doing so great, he might actually qualify for the last palliative surgery (the Fontan). Before we could decide if the Fontan is possible, Owen had to undergo a 3rd open heart surgery, performed by Dr Hanley, to fix his severely leaking Tricuspid Valve. The surgery was a success and we just needed to allow  his body time to heal.

In July, we went back to Stanford for a Cath and MRI to determine if the Fontan would be an option.  His heart function looked great and his Tricuspid Valve repair was looking great.  Owen's pressures had increased in the past year and they were too high to make the Fontan a success.  We decided to reevaluate him in six months. It's so exciting to see how far he's come... just three short years ago.. our only option was transplant. Miracle!!
Owen was granted a wish from the Make A Wish foundation and this past December we went to Disneyworld for 10 days!!!  If there is one thing that we take away from his our boy with a broken heart is this.... make each day count.  Children grow too fast, time is short and we choose to make the best of every day. 
Owen just celebrated his FOURTH birthday this past weekend.  It was an amazing celebration!!  He is obsessed with all things SUPERHEROS!!  We PRAY everyday that Owen will live a good life. That his smile will continue to brighten our lives. We want to watch him grow up, go to school, find his talents and passions in life. His spirit can light up a room, his laughter is contagious and his smile brings HOPE to everyone he passes. He is OUR miracle and a JOY in our lives.  

4 comments:

Sylvia said...

Our baby will have open heart surgery with dr. Hanley on July 18th. You little boy is precious. You will be in our prayers

likeschocolate said...

Congratulations and Happy Birthday to Owen. I don't think they should tell their patients they can abort. I remember those words too clearly, but how could I he was my baby. Thankfully, we didn't and he is a happy 5 year old today who brings so much joy into our lives.

Nicole said...

What great news! My son sounds SO much like Owen. We adopted a little boy with HLHS two years ago (we have had him as a foster child since he was 6 months old). Originally they told us he couldn't have the Fontan due to bad pressures, but Gabe is finally ready for the Fontan and I'm nervous. I wasn't there for the first two surgeries so this will be my first go round. He just had his pre surgery cath last month and we will get the call from the scheduler on Monday. I'm not sure what to expect, but knowing that there are other strong boys out there like Owen, makes me feel better.

I will be praying for Owen and ask that you would keep my Gabe in your prayers as well. Can't wait to see these boys move mountains.

Nicole Pope

Heather Gage said...

I am 28 weeks pregnant and found out at 24 weeks that our precious Liam has hypoplastic left heart and on his right side he has a tricuspid valve that is narrow and leaking , regurgitation. We too have tried for a long time (6 years ) and I have been thru such a painful road already with infertility and PCOS. This is our first successful pregnancy and I am just searching for hope. I had been told so many times that Liam won't make it and may not even be a candidate for heart transplant. We do have a very small glimmer of hope and i am taking digoxin in hopes it may help stress on his heart. We have felt so alone and I just don't know how to make it thru this pregnancy not knowing what will happen. Right now I am just looking for hope, encouragement and prayers. Did Owen have the tricuspid regurgitation with HLHS? Or was that later from surgery. He is such a miracle and I am so glad u have had such wonderful doctors to help you. Is there a way i could contact you thru email? Prayers for us all.
Heather