Mother of Lucian Xavier

Born April 15, 2011

Died April 22, 2011

Chattanooga, TN

I went to my OB on Friday April 15, 2011 because I had been having contractions all night and I was planning on having a c-section on the following Monday.  My due date was April 27th but since I had to have another c-section, we planned it earlier.  My doctor checked me and said “well, congratulations! We will be having a baby today, you are 2 centimeters dilated!”  My entire pregnancy was great, not a whole lot of morning sickness, didn’t gain very much weight, all around healthy baby as far as they could tell, we were excited.  

My husband and I have been together for 7 years and have a 2yr old daughter named Zoë, who was so excited to be a big sister.  The c-section went well, we had ourselves a baby boy!  He was beautiful.  Lucian Xavier means Light House, you can always see the light through the fog.  Well, everything seemed fine, until his blood sugar dropped way below normal, so they had to take him back to the special care nursery to supplement because they didn’t think that he was getting enough breast milk.  Once he was stable, they brought him back in to my room.  The next day his pediatrician came in, he said he thought he heard a heart murmur. He called a cardiologist to take a look.  That afternoon, they took Lucian back to the special care nursery again due to his blood sugar.  I started to get worried when they didn’t bring him back with in a few hours.  Finally the nurse came in and told me that he and I needed to be transferred the the children’s hospital downtown to have some x-rays done.

He had to be taken first, then an ambulance came and took me too.  Once I got settled in, and he got settled in the the NICU, I called to check on him.  They told me that he had a congenital heart defect known as Hypoplastic Left Heart Syndrome.  That the left lower chamber of his heart never developed.  I was shocked!  I didn’t understand..I had 5 ultrasounds done and not one caught this?  How could this be?  The doctor informed me that they had already called Vanderbilt Children’s hospital and they were already on their way to get him and I needed to come spend as much time with him as I could. It took them 3 hours to get there.  I couldn’t leave because I was still recovering from the c-section I had the day before.  I called to check on him at 4am, they had just arrived.  He did well on the way up there but once they got there, he crashed and they had 4 doctors trying to revive him, the lady told me that they had to cut open his chest and manually pump his heart for an hour, but that he survived.  They put him on a heart and lung bypass machine called ECMO. Basically a life support machine.  I was so upset, my son was up there all by himself and I couldn’t do a thing about it.  They told me that they could do surgery but they would have to wait until he got better because since it wasn’t caught until 48 hours after he was born, he got really sick, really quick.  The doctor released me the next day, my husband went up there that night and I came with my mother the following day.  My baby was so pitiful and swollen from all the fluid they had pumped in him.  It was so hard to watch him just lay there and me not be able to hold him.  We stayed with him night and day, they took him off all the pain meds to see if he could function like a normal newborn.  The ECMO machine thins the blood so much that it caused his brain to bleed so they knew that plus the hour of lack of oxygen from CPR had caused severe brain damage.

Well, my baby boy started opening his eyes, his beautiful blue eyes.  I knew that everything was gonna be ok.  Still we stayed there, I pumped my milk every 3 hours hoping that I would get to feed it to him really soon.  Finally, the doctors were ready to go in and see if it would be ok to do the surgery, so they took the breathing tube out and put a scope down his throat to check his lungs.  One had collapsed, and they couldn’t get it back to normal.  He didn’t tolerate that procedure very well.  His stats showed that he was going into renal failure.  It was my birthday!  I was going to have a birthday miracle, I just knew it!  They were finally talking about surgery, pretty soon I would be able to take my baby boy home!  My Lucian!  My light!  The doctors wanted to meet with us, they told us that either we could keep fighting, or we could take him off the machine, but that hour of CPR killed all of his organs.  Oh my god!  I have to make a decision on whether my son dies now?!  NO!  I wanted to keep fighting, I had told him to keep fighting the whole time, why should I give up on him now?  It’s been a week..exactly one week, it was my birthday!  So, my husband and I went back to him.  The cardiologist came in, started rubbing my shoulder and said “I know this is hard for you.  I don’t know how much longer we can keep him alive.  I want you to hold your son.  He deserves to be held by you, not to die on this table.”  How could I say no?  She gave me no choice.  Thats all I wanted to do from day one is hold him.  So, I sat down in the rocking chair, they wrapped him up in a blanket so I couldn’t see all the tubes coming from his open chest.  I sang “You Are My Sunshine” to him as they turned off the machine and removed his breathing tube.  His soul grew wings in my arms.  My baby Lucian was at that point my Angel Baby, forever and always.  My birthday Angel.  He stayed for my birthday.  We love and miss you my baby boy.

Emily can be contacted at Fetisha0422@aol.com
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  1. michelle w says:

    So sorry for your loss. Thats a very beautiful name.

  2. Emily, I sat here in tears reading your birth story. As I finished it I thought that Lucian’s name is still so very true. He is still your light, and will bring you through the fog. Peace and love to you…

  3. Sorry for your loss, your son is a beautiful, strong angel. God bless you, your husband & your daughter during this difficult time.

  4. There are no words…thank you for sharing your story. Our hearts are with you as you heal. Annamarie (Eve’s heart mom)

  5. Lauren Doblar says:

    My heart goes out to you. I lost my son Caleb at 3 days old last September. He also had HLHS and other severe heart defects. If you ever want to talk, vent, anything, I am here for you! Big heart hugs.

  6. As tears flow down my cheeks, my heart breaks for you and your family. I am so sorry for your loss. I hope you can find comfort and peace during this difficult time. We are thinking of you….

  7. I’m crying. My heart breaks for you. My son Corbin was born with Williams Syndrome (www.williams-syndrome.org) that caused heart defects. He fought for three months, and through three heart surgeries but two days after his third surgery his heart stopped.
    I’m so sorry, so sorry.

  8. I forgot to add, You Are My Sunshine is what I sang to Corbin while he was in the hospital and at his funeral. That song makes me cry every time. I’m so sorry.

  9. Jessica says:

    Aw, my heart goes out to you. But at least you got to hold and sing to him. I just reciently lost my son. Half of his heart stopped working. Also, his lungs wasnt fully developed. Hugs to you!

  10. please help me create a miracle..thanks for everyone’s kind words.

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