Liam’s Birth Story

March 14, 2013 by
Filed under: Family, Liam Finn, Oh Baby! 

I wanted to have Liam naturally.  I took the childbirth classes at the hospital, read Ina May’s Guide to Childbirth and even watched The Business of Being Born like 3 times.  I really thought I could do it.  Since I was having high blood pressure issues, my doctor decided to induce me a week early using Pitocin.  At 39 weeks I was huge and miserable and just agreed with him.  As soon as my Pitocin fueled contractions started I knew that my doctor clearly hated me (not really).  And as it turns out, I am a screamer.  I made it to 6 cm naturally and I was in the worst pain of my life.  I have never felt more thankful to have Ben in my life than when I was in labor.  He was so wonderful and coached me through each contraction.  My easy going doctor walked in with his laid back attitude and casual resemblance to Neil Young, which I loved while pregnant and calmly asked me, “Do you need anything for pain?”

2 epidurals and 1 shot of Stadol later, I was stoned and ready to push.  With my eyes barely open, I pushed like a champ.  Once Liam started to crown they realized his cord was wrapped around his neck, so my doctor used vacuum extraction to get him out.  I watched in the mirror as Liam Finn Hodge was born just before 1 in the afternoon on April 18, 2012.  He weighed 7 lbs, 4.8 ounces, was 20 inches in length.  Liam was beautiful but slightly blue when he was handed to me.  The nurses let me hold him for a minute or so and then took him to check his oxygen levels.  From across the room, they informed me that his O2 levels were low and they would have to take him to the nursery for a few hours to monitor him.

Liam and my best friend Nikki

After returning from the nursery, most of our afternoon and a good bit of that night was spent holding him, smiling, introducing him to close friends and family, and nursing.  Liam was perfect and wonderful and we were instantly in love.  I let him nurse around midnight and then the nurses took him to the nursery, so that we could get a few hours of sleep.  They were supposed to return him to me about 3 a.m. for his next feeding.  Instead a doctor politely knocked on the door and turned on the light.  “Mr. and Mrs. Hodge” he said, “Liam has a heart murmur.”  It was at that moment that everything changed.  They explained to us that it was serious and that he needed to be airlifted to Blair Batson Children’s Hospital in Jackson, Mississippi immediately.  They told us they would bring him into our room and let us see him before they put him into the helicopter but that we wouldn’t be able to hold him.  I looked at Ben and just started crying.   We called our parents and explained to them the situation and then just waited to see Liam.  About two hours later, the Batson helicopter team wheeled him into our room in an incubator and explained that they could only stay a minute because he needed to get to Jackson ASAP.  Liam was so red and was crying frantically.  I remember thinking that if I could just hold him, he would calm down, that he just needed someone if not me to hold him.  They wheeled him out and we just cried.

Next a doctor came in and introduced himself.  He could tell that I wasn’t going to stay in the hospital, so he wrote me a prescription for pain meds, gave me some ice packs and filled out my discharge paperwork.  Within the hour we left the hospital, went home to pack a bag and pick up my mom and left for Jackson.  The ride to Jackson was horrible.  I was in so much pain and the car ride only made it worse. I was so worried about Liam and I had to attempt to use my breast pump for the first time in the car.

Once we arrived in Jackson our day only got worse.  Liam had a seizure during the helicopter ride to Jackson and they were not sure why.  The NICU (Newborn Intensive Care Unit) doctors met us in the waiting room and explained to us the procedures for NICU visitors and then let us see Liam.  Seeing Liam in the NICU was the worst experience in my life.  He had so many wires hooked up to him and was under an oxygen hood.  I remember trying to be strong and then just losing it.  I couldn’t stop crying and since the NICU is a sterile environment I had to keep sanitizing my hands and walking out.

We spent the next 2 weeks in the hospital, first in the NICU, then the PICU (Pediatric Intensive Care Unit) and finally in our own room on the 5th floor (the heart floor).  We found out that Liam had 3 heart defects.  He had pulmonary stenosis, double outlet right ventricle and ventricle septal defect which would require open heart surgery.  Liam will be a lifelong heart patient and may require additional surgeries as he gets older. As we were about to leave the hospital, a doctor casually mentioned that Liam had a genetic disorder.  We all looked at him with blank stares.  I honestly thought he had walked into the wrong room.  I said, “We have not been told that.”  He looked really embarrassed and said “I’ll be right back.”  Within an hour a genetic counselor came and gave us more bad news.  Liam’s heart defects were caused by 22q deletion syndrome, which means a piece of his 22nd chromosome is missing.  Unfortunately that also means he’s at risk for a lot of other problems as he gets older, but at this point we are just taking it one day at a time.  With 22q deletion, you have to basically just wait and see.  Every child with 22q is affected differently.

    

 

Skip ahead 10 and 1/2 months and Liam is doing wonderful.  He had open heart surgery to repair the double outlet right ventricle and the VSD when he was about 5 months old which landed us back at Blair Batson Children’s Hospital for about a week and a half.  After his surgery was over we found out that the hole in his heart (VSD) was about the size of a half dollar, which is huge considering his little heart was only about the size of his fist.

Since then, Liam has recovered and is doing great.  Next month, we will be returning to Batson Children’s Hospital because Liam is having a heart catheterization to fix his pulmonary stenosis.  He still sees a team of specialists including a cardiologist, a neurologist, a physical therapist, a geneticist, an immunologist,  an occupational therapist and an endocrinologist, which means we are going back and forth to Jackson pretty often.   The last couple of months have been hard but also really great.  Liam is such a happy baby and brings so much joy into our lives.  We love him so much!

We have received an amazing amount of love and support from our family and friends.  A couple of our friends (Georgia Graham and Joe Whaley) even put together two benefits for Liam and got local bands together to record a benefit album.  I feel so thankful everyday that our community came together to support us in our time of need.  We are a lucky family and I can’t wait until Liam is older so I can tell him about the music festival and album that were put together just for him.

For those parents who may be facing the same battles as us, whether as heart families or 22q families, you are welcome to contact me.  I love connecting with other families who understand what we are going through, it is really helpful to know we are not alone.

by Selena Faye

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Comments

8 Comments on Liam’s Birth Story


  1. Heather Abbott
    on Fri, Mar 15th 2013 @ 11:02 pm

    Thank you so much for sharing your story. My son, Gaige, is now 2 with the same genetic condition. We live outside Kansas City, Missouri.


    • Faye
      on Tue, Mar 19th 2013 @ 2:11 pm

      How is Gaige doing now?


  2. Michele Jacobs
    on Tue, Mar 19th 2013 @ 9:05 am

    I was looking at your pictures and thinking to myself that they could be doubles to the ones I have of my Daughter. Riley also has 22q Deletion Syndrome and had a large VSD (along with about 5 other heart defects) which required open heart surgery when she was 4 months old. She is now a little over 2 and is kicking butt & taking names. I am so grateful for early detection and am hopeful that as a community we can make 22q more well known. Thanks so much for sharing your story!


    • Faye
      on Tue, Mar 19th 2013 @ 2:09 pm

      I am also very grateful they tested Liam for 22q right away. Glad to know your little one is doing well.


  3. Mary
    on Fri, Apr 26th 2013 @ 10:59 pm

    I have a three year old boy who had heart surgery at 3 weeks old and was diagnosed with 22q deletion right after. Levi is doing wonderful! He has had PT, and feeding therapy and is currently receiving OT and speech. He is such a joy and has a very fun personality. He is a very active (maybe too active 🙂 little boy, always climbing on, jumping on and getting into things he shouldn’t be getting into. Never a dull moment with Levi, weather it is him telling me not to tell him no, or him painting himself with peanutbutter or him using his amazing imagination.
    I didn’t know what to expect when we received the 22q diagnosis, but I am so thankful that the last three years have been as joyfilled as they have been, even with the many doctors appts and the worries that come along with this type of thing.
    Mary
    Auburn, CA


    • Faye
      on Wed, May 8th 2013 @ 9:30 am

      Thanks for sharing. When did your little one start speech therapy? My son is just over a year old and really only says dada and similar sounds like that. I’m worried he will have to have speech therapy as well.


  4. Kim
    on Tue, Oct 15th 2013 @ 10:35 am

    My son is 18 with 22q/VCFS/DiGeorge, do you mind if I ask you a question?
    Has your husband been tested for 22q via FISH test. He has some facial features and not all have major issues, I was just wondering
    Glad to see your little one is doing great!!


    • Faye
      on Tue, Oct 15th 2013 @ 10:46 am

      My husband has not been tested. When we found out about Liam, the geneticist asked us a couple of questions about our medical history and then said we probably didn’t have it ourselves. Do you think he should be tested? What facial features are you referring to? Thanks for the comment. I’m looking forward to your reply.

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