Thursday, August 5, 2010

Mom to Berkley Elizabeth
July 17th, 2007-August 15th, 2007
Mustang, OK

After 4 years of marriage, my hubby and I decided that it was time to add a baby into the mix.  I went to my OBGYN, at the beginning of November 2006, to discuss trying to get pregnant and to get a clean bill of health.  I was told that it could take a few months and to not let it discourage me.  Hubby and I began trying immediately.  On December 12th, we got an early Christmas present we weren't quite expecting.  I went to my regular physician for some pain in my side.  Pregnancy hadn't even entered my mind at this point.  I was more concerned with possible kidney stones.  The nurse asked if I wanted a pregnancy test and I said sure but I didn't think it was really needed.  A few minutes later, my doctor came in, felt around on my stomach, asked me some questions, and then said the pregnancy test we gave you was positive.  Positive.  What did that actually mean?  At first, I couldn't comprehend what he was telling me and then it clicked.  I'M PREGNANT?  So soon?  I burst into tears because even though we were actively trying to get pregnant, I didn't not think it would happen so quickly.  I was sent for an emergency ultrasound since I was having pain on one specific side.  My doctor wanted to rule out ectopic pregnancy.  I was determined to be about 4 weeks since I couldn't remember my last menstrual period.  After 2 weeks of constant beta checking, I was told that my numbers were going up and that it didn't look like an ectopic pregnancy at all.  I was so relieved!

At 7 weeks, we saw our beautiful baby for the first time.  I was just in awe of what I was seeing.  I really was pregnant.  I couldn't help but cry.  Her heartbeat was the most beautiful thing I had ever seen.  At 12 weeks, we went for our NT scan with our MFM.  Everything looked good.  We were asked to come back at 16 weeks for growth ultrasounds.  We chose to go to the MFM because hubby's aunt has a common form of dwarfism and we wanted to know the likelihood our children would be affected.  At 16 weeks, our doctor noticed some markers and asked us to come back again at 18 weeks for follow up.  In the mean time, I was just so amazed by my growing belly.  I signed up for weekly updates about my pregnancy and my baby.  I just couldn't get enough.  I never realized the love that I could have for someone I had never even met.

Our 18 week appointment changed our lives forever.  Not only were we having a girl but she had a rare brain defect.  My world was shattered.  As a parent, your hope is to bring a healthy baby with ten fingers and ten toes into the world.  Our daughter was diagnosed with Agenesis of the Corpus Callosum.  Our MFM found a cyst in the Corpus Callosum and determined it to be the cause of her Agenesis.  I remember him asking me to do an amnio and him saying that our window of time to abort the pregnancy was closing.  I told him that I didn't want the amnio because of the slight risk of miscarriage and that regardless what she had wrong with her, she was still my daughter and I was very much in love with her.  We were told that ACC is a non fatal diagnosis.  It is a learn to live with condition.  People with ACC are generally developmentally challenged.  From that point on, I began researching everything I could about her condition.  I wanted to be informed so I could care for a special needs child the best that I knew how.  Agenesis of the Corpus Callosum or ACC is a bundle of nerve fibers in the center of the brain that is responsible for communication between the right and left hemispheres.  People with ACC can be of average intelligence to severely affected.  It is not a one size fits all diagnosis.  It is what it is and you learn to adapt.

At 32 weeks, I went into Preterm Labor and with the help of various medications, I was able to make it to 35 weeks before my water broke.  On July 17th, 2007, Berkley Elizabeth was born.  She arrived in at 4 lbs 13 oz and 17 inches long.  She came out rather displeased actually.  She didn't cry, she pouted.  She cried when they pricked her foot for blood.  I remember thinking, did I just have a cat?  Her cry was the most pitiful, quietest cry I have ever heard.  At my 30 week sono, the tech said that she had hair and boy did she ever and it was blonde.  The next morning, my nurse took me to see her and I remember thinking to myself, she's mine.  I made her and she's all mine.  She's so perfect and she's mine!  She spent 7 days in the special care nursery for jaundice and feeding issues.  Those were the worst 7 days of my life.  Leaving her was heart breaking each and every time.  The nursery was understaffed and over crowded and I just didn't feel like she was getting what she needed.  After spending an entire night in the nursery caring for her every need, I begged the doctor to let me take her home.  The nurses rushed her to eat so she would refused but each and every time for me, she ate great.  He agreed and we couldn't have been happier.

Berkley was the best baby.  She rarely cried.  She ate great, slept great, and was really just an all around perfect baby.  Every 3 days, like clockwork, we took her to see her pediatrician for weight checks.  Slowly she started to gain weight.  She was 8 days old when she had her CT scan.  This was to confirm the original diagnoses of ACC.  She slept through the entire thing and I remember thinking, she is just so small and having to undergo something I've never even done.  The next day, the report came back and showed that not only did she have ACC but that she had Complete ACC, meaning, her Corpus Callosum failed to develop at all.  One of the things that goes hand in hand with this condition is small optic nerves.  So, she was referred to a pediatric Opthamologist.  We learned that she did indeed have one small optic nerve and one was fine.  We were also told that she had a negative 5 prescription and that he suspected she had a form of Albinism called Occulocutaneous Albinism.  He said that her retinas and corneas lacked pigment and that her hair was a funny color.  He suggested we see a geneticist for confirmation.  He also said that she had a very high chance of being completely or legally blind by the time she reached adulthood.  We were upset by this news.  We knew she would already have obstacles to overcome and we didn't want her having more.

As a part of her care, she was also required to see a neurologist.  She was 2 weeks old at her first appointment.  Her neruo's opinion was that she was a normal baby with normal reflexes.  He said that he wanted her to have a MRI but he wanted to wait until she was 3 months old and a little bigger before he would allow her to have it since she would have to be sedated.  He said that if she had no other abnormalities within her brain then we were looking at a fairly mild diagnosis.  He also wanted to see if she had any nerve fibers within her Corpus Callosum.  He told me to take her home and enjoy her and not worry about all the possibilities until her MRI.  I will admit, I had a few days of feeling completely overwhelmed and alone.  My hubby isn't a worrier and he saw no reason to dwell on her diagnosis.  I questioned God's reasoning.  I didn't feel like I could take care of a special needs child.  Every doctor's appointment seemed to bring more and more questions and each time I left their offices upset.  One day I just woke up and decided that this was the card we were dealt and I was going to do everything within my power as her mother to ensure she had the very best doctors, I knew all the right questions to ask, and that she had everything she could ever possibly need.

Then August 15th, 2007 happened.  My hubby told me he would stay up with her the night before.  I wasn't really sleeping very good because I was always checking on her.  He got up with her at about 1 am to feed her and change her diaper.  He sat down in the recliner and put her in his lap.  He was waiting for her to go back to sleep and he fell asleep too.  He woke up at about 5 am and noticed she had blood in her nose and that she wasn't breathing.  The next words have haunted me since the second I heard them.  He woke me and said "Berkley's not breathing, I'm calling 911!"  I will never in my life forget the panic in his voice.  I was out of bed in a second and in her room.  Her lifeless body was laying on her changing table.  He was on the phone with the dispatcher while I was performing CPR.  The paramedics were at our house before we knew it and they took over.  They couldn't find a pulse.  I remember them telling me it was too late.  She was gone.  My neighbors could even hear me scream from their house.  The next few hours were a blur.  Our house was crawling with police, family, friends, and the medical examiners office.  I sat on her bedroom floor holding her and pleading with her to come back.  I couldn't process what was happening.  She was fine the night before and now she was gone.  We were asked to leave our house so the ME's office could begin their investigation.  Whenever a baby dies unexpectedly and suddenly at home, they have to assume the worst possible scenarios.  I was appalled that they were investigating us for child abuse.  I would have died for that baby without question.  She was my entire world.  I had a complete nervous breakdown and ended up in a mental health facility on suicide watch.  I really just wanted to die.  I wanted the world to forget me and just let me crawl up into a ball and die.

She was laid to rest on August 22nd.  I vaguely remember her funeral.  I was heavily sedated so that I would make it through that day.  We had so many wonderful people come out to help us celebrate her short life.  That day was the last day I ever got to hold my daughter.  That day she was christened.  She wore a white dress with white leggings.  She was laid to rest in a white coffin with white flowers surrounding her.  I chose white because she was so innocent and pure.  Her graveside service was hard.  It meant she really was gone.  FOREVER.  I remember the first time it rained after her funeral.  I wanted to go out and put a tarp over her grave so she didn't get wet.  I was a complete mess for a long time.

Over the next 3 months, I called the medical examiner's office almost daily.  I was hoping for any shred of information they could give me as to why she was gone.  I dealt with crazy guilt.  I was her mother and I was supposed to protect her even from death.  I felt every emotion of the grief possible in that 3 months.  Then on November 15th, I called yet again for an update.  They had a cause of death.  They listed it as undetermined.  I was told that multiple things may have contributed to her death but they couldn't pin point any one cause.  I just couldn't understand how will all of the technology available today, they couldn't found out why she was gone.  The thought of them cutting her open to perform an autopsy made me want to vomit.  She was perfect and I wanted her to remain that way.

To this day, I do not know why my baby girl isn't here anymore.  The SIDS Institute regards it as a normal SIDS death.  Her pediatrician has hinted at that the maybe she had a sudden onset of heart failure based on information listed in her autopsy report.  Really, I guess there is no way to every really know what took her from us.  My only comfort is knowing that when she died, she wasn't alone.  She was with her daddy and she was loved.

You can contact Erin at


Lilly's Mom (Desiree) said...

absolutely heartbreaking. so sorry for your loss.

brigette said...

Im so sorry for your loss. What a hard thing to go through!

Shannon Renfro said...

I am so very sorry for your loss. You described many of the same feelings I felt. All I can say is to cherish those moments and memories that you had with your precious daughter. My daughter didn't even open her eyes. I know our situations are different, but I would, as I'm sure you would, give anything to hear her cry or look into her eyes. Again, I am so very sorry for your loss.

Erika Sabo said...

I am so so sry...My 3rd baby died when he was 20 days old. he was our only boy. And I can relate to how the officers made us feel too. Just HORRIBLE. I am still waiting to find out the cause of death and making that phone call gives me much anxiety..I am so so sry again

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