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January 2013 Moms
birth story - microcephaly and bicornuate/septate uterus - miracle baby
Hi all, I am writing this post in hopes that another mom/parent in the same situation finds material regarding a prenatal diagnosis of microcephaly.
Here is my little girl's story:
went to the ob/gyn for our 12 week visit, andduring this visit, the ob/gyn found that I have a "bicornuate" uterus - which pretty much means that my uterus is heart shaped instead of round,and sometimes bicornuate uterus's can lead to premature labor, miscarriage,breech position, and other complications. However, our doctor remainedoptimistic regarding the pregnancy and so were we....at the time, I didn't share this with many people because I was embarrassed. Might sound stupid, but I was. I dreamed of this "perfect" pregnancy and "perfect" family, and didn't want others to know otherwise.
The pregnancy was deemed high risk because of the uterus, but the
pregnancy remained largely uneventful for the first eight months... We found out we were having a little girl and were overjoyed - we decided to name her Elliana Marie, and we would call her Ellie.
Every doctor's appointment presented normal test results, and I decided to "celebrate" the pregnancy around Christmas, as our baby girl had grown big
enough to be a preemie - I stopped worrying about my uterus and its odd
shape.
On December 21st, 2012 we went to the ob/gyn for our 36 week appointment;
at the appointment our doctor noticed Ellie's head was measuring at the 30
week mark, and was very small. She did not raise any alarms with us, but
hinted that Ellie may be delivered early and scheduled us for nonstress
tests, etc. She also referred us to a specialist to be seen after Christmas.
On December 28th, 2012, we went to see a perinatologist who completed non stress tests and thorough ultrasounds.The doctor came to see John and I and said straight out "it's not good."The doctor stated that she was severely concerned with Ellie's small head shape, and in addition to her small head, stated her eyes were too close together, and her thorax was also too small. She gave us a pre-diagnosis of microcephaly, and explained she was concerned with Ellie having severe developmental delay and facial deformities, amongst other issues, and stated she may have some type of chromosomal abnormality.
We were absolutely devastated. I cannot really explain it, and it's not a
place I want to go back to. To think that our baby may not ever walk, talk,
live on her own, have a limited lifespan and experience major and multiple
health issues was too much to bear. John and I spoke to our doctors andfamily in Tampa and decided to temporarily relocate back to Tampa, to
deliver at All Children's Hospital, and to take it one day at a time.
We flew to Tampa in early January and on January 7, 2013 met with a team
of doctors to prepare for Ellie's arrival. First, the genetics team, which
pretty much told us to "wait and see" - our motto since December 28th;
then, the neurologist, who had a different opinion than everyone else. The
neurologist presented us with a case study from 1983, in which a woman with
a bicornuate uterus gave birth to a baby girl they believed had
microcephaly...that woman put her daughter up for adoption, only to realize
months later that her daughter did not have microcephaly; instead, it was
the woman's bicornuate uterus that caused the head to stop growing in
utero, but once the baby was born, the head grew just fine and the baby
grew up to have no health problems. While the neurologist provided us with
a brief glimpse of hope, it was our next appointment, with the
perinatologist, who would perform additional ultrasounds and tests, that we
were really looking forward to. She came in, examined the ultrasound, and
armed with information from the doctors in California, and will be known as
the "dream crusher"...as she stated not only did Ellie have microcephaly,
but combined with the eyes too close and the thorax too small, she was
concerned Ellie may not have "capability to life"..and then we went numb.
She performed an amnio, to provide us with information if Ellie had trisomy
18 or 13, severe chromosomal abnormalities, etc. We would receive one
portion of the test results back in 48 hours, and were hoping to receive
the rest of the results back before delivery. Given my uterus shape and her
complete breech position, we were scheduled for a c-section the morning of
January 22nd.
We left the doctors, defeated, I went to bed, cried my eyes out, and threw
away the case study from 1983. I just prayed that I would meet my daughter,
I prayed she would only have microcephaly...funny how that works. Two weeks
earlier I received the worst news of my life, only to pray now that only
that news was true. The next two weeks leading up to delivery are somewhat
blurry...actually, the entire month of January is. We received the 48 hour
amnio test results back and they were "normal" but we would not receive the
other amnio results back until after delivery, which left us preparing for
the worst and praying for the best.
I came to peace with the diagnosis of microcephaly and anything else
thrown our way. I found strength and courage by reaching out to support
groups of parents whose children have microcephaly...I learned a new
definition of "perfect" - I was ready to be Elliana's mommy. And I didn't care about the shape of her eyes, I didn't care about the label of "special needs"; I just cared about being there for my daughter. I packed her hospital bag with an outfit I
wanted her to wear if she did not survive; I looked up photographers who
take pictures of angels born sleeping; I looked into priests who could
baptize her - and read her last rites.
>> I went into the operating room on January 22, 2013, ready to welcome Ellie
>> to the world and ready to care for her and love her - I was ridiculously
>> calm, yet excited, to meet my little girl and have our family together. The
>> last thing I heard was the doctor asking where the resuscitation team was.
>> Our angel was born at 10:53 am, weighing 7 lbs, 19 1/4 inches long - and
>> she was crying!! I got to see her for a minute before she was whisked away
>> to the NICU, and I immediately fell in love. Ellie spent the next six days
>> in the NICU, going through a myriad of tests - CT scans, MRIs, EKGs,
>> skeletal scans, you name it, she had it. And every day we waited for the
>> doctors to make their rounds to give us the results of the tests. One day,
>> they let us know the CT scan was normal. The next day, the EKG, then, the
>> skeletal scan, and on the 4th day - the MRI. Normal. Her head had not
>> prematurely fused together, her brain was operating at a normal
>> level....and then they told me I could hold her.
>> The doctors were baffled - they said besides jaundice, and a few minor
>> items - that she was perfectly healthy.
On Sunday, January 27th, my due
>> date, Elliana was discharged from the hospital. The neonatologist that made
>> the final rounds stated that it seemed as though my bicornuate uterus
>> caused the small and odd shape of Ellie's head - and that it should self
>> correct over time. We might need to get her fitted for a helmet, and we
>> need to follow her developmental milestones closely - but her discharge
>> papers state "no problems found."
>> This week we visited with the neurologist - the one who presented the 1983
>> case study. She checked Ellie out and said she was perfect
>> neurologically...and a miracle baby 
We also discussed completing a case
>> study about Ellie. Microcephaly affects about 1 in 85,000. The fact that my
>> uterus caused her head shape, etc, is even more rare. This way, the next
>> family to have this experience will have more recent findings than 30 years
>> ago. We also are partnering with All Childrens to help publish Ellie's
>> story - to inspire other families, to participate in their annual telethon,
>> and to publish medical science journals so perinatologists and other
>> doctors learn about our story too.
>> On February 5th, 2013, little Elliana was two weeks old,
>> measuring at 7.2 lbs, 22 inches, and a head circumference of 33 cm - 2 cms
>> since birth. She continues to thrive.
>> I do not know how many people prayed for our daughter, but I know there
>> were many, many more than I could ever know. And I want to say thank you -
>> the support we have received from family, friends, neighbors, and strangers
>> has been overwhelming and beyond comforting.
>> I want to ask you to continue to prayer and support families affected by
>> microcephaly and for children with special needs. Imagine the experiences,
>> trials and tribulations of those families with many more obstacles to
>> overcome than we have...John and I have been profoundly impacted by the
>> past six weeks, and will be forever, as we have been greatly inspired by
>> those families. We are currently researching ways in which we can
>> contribute to the special needs community and give to those families who
>> need support...so whether it is through All Children's Hospital, the Ronald
>> McDonald House, the Foundation for Microcephaly, or simply teaching Elliana
>> about children with special needs, or a combination of all, we will spend
>> the rest of our lives returning the prayers and hope that you all have
>> given to us.
>> To think that I was once concerned about what people would think about the
>> shape of my uterus, the shape that saved Ellie, blows my mind. And now all
>> I want to do is publish this information so other families maybe won't have
>> to go through the same experience as we did. But looking back on it, I
>> wouldn't change this experience for the world. Elliana may only be 14 days
>> old, but she's taught us so many life lessons already...
This discussion has been closed.
Re: birth story - microcephaly and bicornuate/septate uterus - miracle baby
Kendall, 1/1/13
I wanted to reach out to you because I am going through this.
I also have a bicornaute uterus and my LO head is measuring small. At her 35week ultrasound her head was measuring at 32 weeks. At 37weeks her head was measuring at 35 weeks. I brought up the idea to my dr. that maybe her small head size is caused by the bicornaute uterus.
After reading your story it brought tears to my eyes, that it could just simply be that! She could just have an odd head shape.
When we first found out about my uterus, I also felt embarrassed... It wasn't until her head starting showing signs of delay, that I needed and wanted to tell someone. I needed to talk to anyone who had this experience before but of course this is so rare.
Thank you so much for sharing your story!
I am due on Nov 24th, which is in just a few days. I will also share my story and I hope that mine also ends happily.
Hi @rebecca20, @Lioness03 and kitkat=23
Any updates on your LO's?
I have also been sent to a perinatologist by my OBGYN as my baby's head was measuring smaller than it should be? I also heard the word "microcephaly" by the perinatologist and googled it when I got home and started freaking out.
I am praying everyday, that my baby will be fine by the Grace of the Almighty!
Please keep on sharing and giving hope! You dont know who you may be assisting that is going through fear! especially a first time mom like myself.