Dana McCusker

Mom to Shane McCusker

August 9, 2010 – August 11, 2010

Westlake Village, CA

 

I found out I was pregnant in early January.  We were so excited when we saw that positive pregnancy test.  We waited almost 11 weeks before we decided to tell anyone.  When we finally did, everyone was so excited for us, our parents in particular as this baby was going to be the first grandchild on both sides.

My pregnancy was very normal, other than some prolonged morning sickness.  Every test came out great and every time we went to the doctor, everything checked out normal.  We found out at 19 weeks that we were going to have a baby boy.  My husband and I were thrilled. After months looking through baby name books we decided on the name Shane.

Shane was an active baby, while he was in my tummy.  His heartbeat was always easy to find and always strong when I would go in for my appointments.  The doctor had prepared me for a big boy to be born, as his head was measuring in the 98th percentile.

My actual due date was September 22, which was also going to be my 28th birthday, but Shane had other plans.  Shane was born on September 9, 2010 after an easy 10 hours of labor, and with zero complications.  It was the happiest moment of my life.

Shortly after Shane was born, the nurses expressed a concern for the kind of cry he was producing.  They said it sounded as if he had fluid stuck in his lungs.  They were not overly concerned, but called in the respiratory team to see if they could help him clear his lungs.  After some time in the delivery room with Shane, he was still not producing the correct cry so they decided to take him into the NICU.  They assured us that he would be back with us within the hour.  My husband nor I could go into the NICU with him, due the a shift change,

The hour, soon turned into hours.  One of the NICU nurses came into our room with a very solemn look on her face and with a cracking voice, told us that Shane had stopped breathing.  They had been able to help him, but that the situation seemed more serious than just some fluid in the lungs.  She informed us that they were running more tests and that the doctor would be in to see us soon.

When the doctor finally arrived, we were in shock.  Nothing could have prepared us for such a serious problem.  The NICU team had discovered through x-rays and tests that Shane had a very serious heart and lung problem.  They discovered that Shane’s heart was on the right side of his chest, rather than the left.  They also learned that the reason Shane was having difficulty breathing was because he was not able to receive the proper oxygen level to his blood.  They had him on monitors to help him, but they told us that this was much more serious than they were able to deal with at this hospital.  They informed us that a transfer needed to happen that night to get Shane over to a children’s hospital where they could get him the most advanced help.

We got to spend some time with our son in the NICU that night before the transfer took place.  Shane was the biggest baby in that NICU, but yet he was the one struggling the most.  When we saw him, he was hooked up to so many monitors, and had tubes in his mouth, yet he just laid there, with his eyes open, taking in the surroundings.  He was moving his legs and arms, and he stared into our eyes.  That was really the first time I got to really look at him.  He was so handsome and so brave.

That night, Shane was airlifted to the other hospital and we were not allowed to go. That was an awful feeling.

In the morning, we were discharged and headed straight for the hospital where Shane was.  We were greeted by his cardiologist who sat us down and explained the severity of Shane’s case.  Shane had a condition called Dextrocardia, which is the condition of the heart being on the right side.  That was not the main concern though.  Shane suffered from a condition called Total Anomalous Pulmonary Venous Return, which in simple terms meant that the veins that are supposed to go into the heart, were instead routed to a different area in the body; in Shane’s case, it was his liver.  This was the reason Shane was having so much difficulty receiving proper oxygen levels in his blood.  The MRI also determined that Shane was missing his spleen and that his liver was elongated and located in an unusual part in his stomach.  To put it simply, Shane’s insides were not right.

They informed us that Shane would need immediate surgery to try to reroute these veins into their proper places. They prepared us for the best and the worst., but there was no other choice, Shane’s only chances of survival would depend on this surgery.

We were allowed to see him before the surgery.  This was the best moment I had with my son.  He was awake, aware and calm.  I held his hand and kissed him, I told him to be brave and that I loved him more than anything.  He looked into my eyes at that moment, and I will never ever forget it.

After 5 hours of surgery the surgeon came down to tell us Shane had pulled through.  He was excited to tell us the news but also hesitant to get our hopes up.  He told us that Shane would be left under anesthetics for 2 days, and that his chest had to be left open due to the possibility of swelling.  We were allowed to go see him though.

Seeing Shane on that table, swollen from the medicine, asleep, with a clear covering over his open chest was difficult.  He was surrounded by huge machines.  I held his little hand for a long time.  I touched his little feet and I kissed his little forehead.  It was hard to see my baby in such a serious state.  No parent wants to watch their child go through any kind of pain, and looking at his little body having to go through so much, killed me.  We tired to get some rest that night, as the doctors informed us to at least try since there was nothing we could do.

September 11, 2010, was the worst day of my entire life.  Due the critical state Shane was in, his little heart just couldn’t take it.  At 2 am Shane’s blood pressure dropped and the doctors could not resuscitate him.  On the day that I should have been taking my son home from the hospital, I was instead having to give him back to God.  I spent 3 hours holding him in that hospital room, completely heartbroken, devastated and angry.  How could this have happened?  Why did it have to happen to Shane?  How did this go undetected?  I was such a paranoid pregnant woman.  I did everything  I could to give my baby a healthy life and this is where we were.

For 38 weeks I dreamed of the life that Shane would have.  I imagined going to his baseball games and watching him play with his friends.  I wanted to give him everything this world had to offer because I wanted him to be able to do anything he wanted to do.  Shane’s life was short but that doesn’t mean it was not an important life.  Today, 10 months later. My husband, my family and friends have all supported the efforts to start a Foundation in Shane’s name.  It’s called Shane’s Heart: The Shane McCusker Foundation for Pediatric Cardiology.  The purpose of this foundation is to help children who are born with congenital heart disease.  We want to bring awareness of CHD as heart defects are the most common birth defect in babies.  We want to educate the prenatal world about how important it is to check babies hearts for heart problems so in the rare case that something is wrong, and so that such severe cases, like Shane’s, won’t go undetected.  We will never know if Shane’s life could have been different if it was detected.  I want more than anything for my baby to be here physically, but we know that is impossible.  We hope with Shane’s Foundation, his life will help make a positive change in this world, because Shane was such an amazing little boy.  He taught me more about life than anyone ever has. Shane is forever my son and he will always be my first born.  I know he was brought on this earth for a reason.

Dana blogs at www.Realityunedited.blogspot.com

Shane McCusker Foundation www.ShanesHeart.org

You can contact Dana at danamccusker@hotmail.com

 

 

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Comments

  1. Amber says:

    Thank you for sharing Shane’s story. It made me cry; I love how strong you are and the wonderful things you are doing in Shane’s memory to keep him alive, always. I lost my baby boy at 19 weeks, so I can relate just a little to you. Many hugs and I hope Shane’s Heart is wildly successful!

    • Dana says:

      Thank you Amber. Losing a child at any stage is the worst thing. I know Shane is in a place where his heart can beat normal and where he is happy. I wish so badly that he was here, but I know he is watching over me, just like your little guy is with you. xoxo

  2. Dani Shamp says:

    I am so very sorry for your horrible loss. He was a strong little boy, and I’m sure he got that from having all the love surrounding him. It is a terrible feeling, knowing there is nothing you can do. But we just need to stay assured that we will meet our little men again in heaven, where they are waiting for their mommies. <3 Praying for you <3

  3. carmen benjamin says:

    Thank u for sharing your story, our son Ethan died on 12th may after 2 days due to Pulmonary Atresia which is also a heart defect, I can relate to your pain and I pray for our angels which is around us always, my thoughts and prayers are with you

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