CHD week: The Ultimate Gift

We were warned when I was carrying Evan that eventually he may need a heart transplant.

We hope that is a road we don’t have to travel down and that Evan’s heart gives him the chance to get to adulthood.

It was clear…a transplant doesn’t “cure” anything.  It’s just changing one disease for another.

It’s the difficult choice you make as a parent…praying to God for the perfect heart for your little one…while praying to God to comfort the family that is going to give YOUR child the ultimate gift…the gift of life.

Meet Dawn – Heart Mama to Adelaide 

Visit Adelaid’s blog at : http://nearadelaide.blogspot.com/

Adelaide wearing her Heart Hero cape!

Today, I saw a YouTube video that someone posted on Facebook… it was a video of a nurse giving a newborn baby a bath.  It was a very sweet video, and though it initially made me smile, I soon found myself tearing up as I watched the cuddly, sleepy, tiny newborn baby be cradled and bathed… because I missed out on so much of the joyful newborn baby experience.  I don’t often feel sorry for myself, but today I did – as I watched that video of that newborn baby, I felt sorry for the fact that I didn’t get that experience.  I didn’t give Adelaide a bath until she was almost three months old, because she spent the first eleven weeks of her life at Childrens Memorial Hospital.

Adelaide was born with a condition called hypoplastic left heart syndrome – HLHS.  We were unaware of her diagnosis before she was born, and we spent the first few days of her life in what I can now call (in hindsight) blissful naivety.  Looking back, I am so glad we had those days of cuddles and snuggles and happy family time, because they helped keep me going in the months that were about to come.  Adelaide passed two APGAR tests with flying colors, was pink and happy, and breastfed like a champ – we had no idea anything was wrong.  It wasn’t until she was three days old that her condition was discovered.

The last night before we were supposed to take Adelaide home, I had a sharp pain in my right leg.  Because I had a C-section, the doctor ordered an ultrasound of my leg to make sure everything was okay.  We sent Adelaide to the nursery so my husband could come to the ultrasound with me; this was the first time she had been away from us aside from the daily weight checks, as she had roomed in with us for our whole hospital stay.

Thankfully, my leg was fine.  However, while Adelaide was in the nursery, she turned grayish and started breathing rapidly.  One of the nurses noticed this and called the on-call doctor, who happened to be a cardiologist with the local childrens’ hospital.  He quickly ordered an echocardiogram, which showed that Adelaide had HLHS.  Basically, the left side of her heart was very underdeveloped and non-functional.  (It’s at this point that I have to say, it was nothing short of divine intervention that things unfolded as they did – I was given that pain in my leg for a reason… to make sure that Adelaide was under the constant watchful eyes of the nurses in the nursery, instead of in our dark hospital room as we slept, so that the nurse would notice her change in color – call the doctor – order the test – discover her life-threatening condition.  I don’t want to even think about what would have happened had she not been exactly where she was at the exact moment she needed to be.)

Another cardiologist came into my room around 3:30 that morning to explain Adelaide’s condition to us.  She let us know that within her first years of life, Adelaide would require three corrective surgeries to reroute the “plumbing” of her heart.  One would need to take place within the next several days, one around 4-5 months of age, and one around 2-3 years old.  Adelaide was going to be transported directly to Childrens Memorial Hospital in Chicago.  Before she was taken there, my husband and I were able to visit her in the NICU.  We were relieved to see that aside from some IV lines and bandages, she still looked like our daughter, and she didn’t seem to be in any pain.


Later that day, I was discharged from the hospital and my husband and I went to see Adelaide at Childrens – the place that would become our home away from home over the next three months.  

The first few weeks of Adelaide’s hospital stay were a busy blur of nurses, doctors, medicines, infections, and medical terminology I never thought I’d have to learn.  She was originally scheduled to have the first corrective surgery (The Norwood Procedure) at 8 days old, but it was postponed due to an infection in her bloodstream.  Thankfully, the infection cleared quickly and she had her Norwood at 13 days old.  The day of Adelaide’s surgery, our friends and family waited with us in the waiting room – anxiously awaiting updates from the APN as the surgery progressed.  After almost eight hours, Adelaide’s surgery was complete.  Things had gone as well as possible, and her heart had started beating on its own after she came off of the bypass machine – which was a very good sign.

After a week or so of incredibly fast recovery, unfortunately, Adelaide took a few steps backward.  Though she had been successfully extubated a few days after The Norwood, she started having trouble breathing on her own and ultimately had to have the breathing tube put back in to help her breathe and take some of her body’s workload away from her heart.  (If her body was struggling too much to breathe, it put more strain on her heart, which is bad in general – but especially bad for a baby who only has half of a heart and is recovering from open-heart surgery.)  Her heart function had also decreased and was not improving despite the breathing tube’s assistance to help her body recover.

It was at this point that we first met with the heart failure/heart transplant team.  I can’t remember exactly how or when the conversation we had with them changed from, “We just want to introduce ourselves to you in case we need to start talking about transplant as an option,” to, “We need to seriously talk about the process of listing your daughter for a heart transplant,” but… that happened, and one month exactly after Adelaide had her first open-heart surgery, we listed her for a heart transplant.

Adelaide was listed as status 1A – the most critical status, because she was on a ventilator and required a constant drip of IV drugs to help her heart function.  After we listed her, my husband and I struggled to deal with the fact that the thing we were most anxiously waiting for – a new heart for our daughter – meant that another family was about to experience the greatest tragedy and our worst nightmare.  It didn’t seem fair, but it was our reality.

Five short days after listing Adelaide for transplant, we got “the call.”  They had found a suitable donor heart for Adelaide and though they still had to go physically see the heart to confirm, all preliminary tests were very promising.  “The call” came the day after we had had a prayer service at our church, where friends and family came together to pray for a miracle.  “The call” also came on the eve of my husband’s and my fourth wedding anniversary.  We were overwhelmed, scared, excited, nervous, and overall – hopeful.  The signs were all favorable – our miracle was happening.

Adelaide went into her transplant surgery just after midnight on our wedding anniversary.  She was seven weeks old.  Around 7:00 that morning, the surgeon came out to tell us her surgery had gone very well, and that her new heart had started beating on its own – again, a wonderful sign.  

Adelaide had a very smooth recovery from her transplant.  When she was extubated three days after her surgery, she gave us her first smile – and it was in that moment that we knew she was going to be okay.

That’s not to say that life post-transplant isn’t without risks, or possible complications.  Adelaide will be on anti-rejection medicines for the rest of her life, and those medicines carry a looooooong laundry list of possible negative side effects and complications.  If you really want to know what those are, you can Google them – I’m not going to go into it here.  Because of her anti-rejection medicines, Adelaide also has basically no immune system, so she’s much more susceptible to infection and disease than your average person.  So yes, there are a lot of things that could pop up down the road and that may challenge us.

But, as her transplant team so often says (and we love them for having this mantra) – they didn’t save her life to not let her live.  They encourage us to help her have as normal a life as possible.  While we use caution and try not to take her out in public more than is necessary during the height of flu season, we still go out to dinner as a family now and then, and she loves to go to Target with us.  When she’s a bit older, we will take her to kid-friendly activities at the library, or at the park-district – and from the way she moves, I think she’ll love taking dance lessons when she’s ready!  And, we fully intend to send her to preschool, kindergarten, middle school, high school… college.  We will always be cautious, but we will never hold her back.  Her life was saved so she can LIVE.

Adelaide is now almost 17 months old and is thriving.  Though she did have some slight physical and feeding delays due to spending the first three months of her life in the hospital, she quickly caught up and hit most of her baby milestones right on time.  She is currently a spunky, energetic, sweet, loving, talkative, smiley, adorable little girl who loves to dance, adores penguins, and gives the cutest little kisses.

I am so thankful to have this opportunity to share Adelaide’s story with those of you reading this, and I hope you have enjoyed learning about our little heart warrior.  I also hope that her story and journey can help spread even a little awareness about congenital heart defects and the impact they have on children’s and families’ lives every day.  Thank you for taking the time to read Adelaide’s story!

Norwood: Adelaide the day before her Norwood procedure, and Adelaide one year after her Norwood.

 

Adelaide on her first Heart-a-Versary in October 2012

 

Happy 1 year birthday!

 

 

Comments

  1. She is just adorable! Thanks for sharing Adelaide’s story 🙂

  2. I have followed your story and Adelaide’s amazing journey since she was first diagnosed. I took part in the making of Squares for Adelaide which your wonderful friend made for her…a beautiful quilt with special meaning in each and every quilted square, a treasure Adelaide will have forever. But I never really knew your journey, not how you felt. Thank you Dawn, you make me feel so fortunate to know your Mom, to get to know you through her. This story made me cry, you are so courageous and this story, I can tell, is written with many of the raw emotions you felt at the time. All I can say is God is great! God did have a plan for you and your husband and especially for your sweet daughter! This little girl has so much love all around her, and I must say, she has awesome grandparents!! Take care Dawn, thank you for sharing this story!

  3. Yvonne Invergo says:

    Dawn, your mom shared this story with me. It is wonderfully written and evidence of the miracle that is Adelaide. I had a nephew who was born with a very similar condition, had surgery at 8 days, yet did not make it. He, too, would have required several more surgeries. Adelaide is such a beautiful little girl and I love seeing the pictures that your mom posts on FB. Thankyou for sharing your story~

  4. linda j hall says:

    just love how everything turned out! Adelaide has her own special angel. and she has a completely wonderful family! love you all!

  5. Barbara Meyerhoff says:

    God Bless everyone for making this miracle happen. Part of the story not written is what exceptional parents this little angel has. I know Dawn and Brian have passed their strength and love on to this adorable baby girl. To the donor family, words cannot express what you have given, what a wonderful and selfless gift you have given. Thank you.