<div>March 23rd, 2025 was the 5th Anniversary of Lacey Grace's diagnosis!
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<div>Mike and I were riding the high of our
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<div>gender reveal the previous day. We went to our 20 week anatomy scan and my mother went with me for the ultrasound (only one person was allowed due to newly implemented Covid regulations). We basked in the images of her 1st
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<div>granddaughter. She and Mike switched out for the doctor appointment Due to my age (35), we already had genetic testing done and the results were all normal. We had no reason to suspect anything was wrong. However, this Mama had a nagging feeling I just couldn't shake.
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<div>When Dr. Sinnot entered the room, the
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<div>tension was immediately palpable. The
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<div>words he spoke next forever changed our
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<div>lives. "You're baby's scan is abnormal.
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<div>There are signs of a lemon shaped head
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<div>and there is a 'bubble' on the lower portion
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<div>of the spine, he said. My ears were ringing
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<div>and my face was hot. I squeezed Mike's
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<div>hand and choked back tears.
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<div>What does this mean? What is wrong with
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<div>our baby girl? How are we going to cope?
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<div>What happens next? The thoughts and
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<div>questions raced through my mind. Dr.
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<div>Sinnot stumbled to find the images that
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<div>showed the lesion on her spine. As he
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<div>frantically searched, showing little other
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<div>emotion, he said the words 'Spina Bifida'
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<div>for the first time. He went on to share that
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<div>this is an anomaly he knew very little about
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<div>and had only seen a few times in his twenty plus year career. The doctor went on to explain that we would need to see a Maternal Fetal Medicine (MFM) doctor in Indianapolis. Dr. Sinnot's team would make the appointment for us and call as soon as they had it set up. We walked out of the office hand-in-hand, stunned, trembling and rattled to the core. My parents were waiting in the car for us. My mom says she will be forever haunted by the look on my face as I exited the building. I was DISTRAUGHT and FURIOUS. We would go home and share this devastating news with the rest of our family. We prayed for different news from the MFM. We waited and hoped and prayed, together. I did some research of course and was horrified.
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<div>My family left the following morning and we geared up for our appointment with Dr. Sumners. Upon arriving they did a more invasive ultrasound. All the hoping and praying was for naught. The news he delivered was much more bewildering and earth-shattering than we could have imagined. Our unborn daughter
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<div>indeed had Spina Bifida. We were told that her lesion level was "high" and "large". That it was mylomenigocele, a severe form of Spina Bifida, likely starting at the L2 vertebrae and going all the way down the sacrum (S5). We were told she would be wheelchair bound and have no movement from the waist down. We were told she showed signs (the lemon shaped head) of a Chiari ll malformation which meant she may be unable to speak, swallow or even breathe on her own. We were told she would have no quality of life and were encouraged to terminate the pregnancy.
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<div>Immediately following the ultrasound we set down with a specialist to go over our options. She gave us information about our three options. Terminate, post-natal repair or be evaluated to see if we could qualify for pre-natal repair surgery. Pre-natal surgery is only offered at certain hospitals around the country and would likely require us to relocate for the duration of my pregnancy. In the event that we qualified, we only had a
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<div>small window of time to make the decision.
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<div>Pre-natal surgery for MMC repair can only
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<div>be preformed from 19 to 25.6 weeks
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<div>gestation. We were 20.2 on diagnosis day
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<div>The thought of terminating threw me into
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<div>hysterics as tears streamed down my face.
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<div>It just wasn't an option. I already loved my
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<div>baby girl more than words could ever
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<div>express. The thought of pre-natal surgery
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<div>was completely INSANE to me! So there we were with one viable option that didn't
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<div>sound like a great one. We clearly needed
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<div>time to digest and process the trauma.
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<div>The drive home was the most solemn time we have ever experienced. We were
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<div>completely numb and in utter shock. For countless hours, we cried. We mourned the loss of so many dreams. Our dreams for a healthy baby and a "normal" future for our little family. We grieved for our baby girl and grieved for ourselves. We allowed ourselves to feel the pain of our "loss" fully. Loss of a dream. Loss of what we thought would be. Loss of normalcy. I cried out, "I don't want this to be our new normal!" And yet there we were faced with a completely different circumstance than we ever envisioned.
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<div>Diagnosis day was the very worst day of
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<div>our lives. It was the most gut wrenching
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<div>pain I have ever been forced to endure.
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<div>The very next day we woke up and began
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<div>the process of getting scheduled for the
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<div>prenatal MMC repair surgery evaluation.
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<div>The INSANE option suddenly felt like the
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<div>ONLY choice in our hearts. We did qualify
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<div>and had the prenatal closure. Lacey Grace
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<div>was born full term at our scheduled
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<div>c-section at 37+1!
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<div>Lacey's beginning has an emotional impact on all who hear her story. Her journey has an inspirational impact on many. Spina Bifida is lifelong medical condition. An overly simplified comparisson can be made to that of a person who suffered a variety of ways. Her proper care requires ongoing medical care (9 or so different specialists), weekly therapies (OT/PT), medical supplies, supplements medications, and a variety of assistive equipment (plus diy adapting $). I'm sure there's more I'm leaving out, but the point is we've learned to ask for help. We can't do this alone! It takes a village after al! And so today, at almost four years old, with God's good grace Lacey Grace continues to thrive. She is making leaps and bounds daily. Her verbal and nonverbal communication skills are off the charts! We focus on the positive above all else because we have too. We know we wouldn't be wear we are today without God's blessings, the kindness of His
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<div>children and our village!!!
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<div>God has spoke to our hearts and helped us to realize that we want to start giving back to a community that helped us so much in the hardest time in our lives. So we have created a 501c3 Non-Profit organization called Laugh Like Lacey Inc. Laugh Like Lacey Inc. aims to serve others by providing specialized support and services for young children with disabilities and their families.
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<div>Please support Lacey's 5th Annual Benefit Fundraiser and Ride anyway you can! lf you cannot attend we understand. If you can afford to donate we will be so grateful and it would mean the world to us. We appreciate your help to continue giving our beautiful daughter the best medical care around &amp; for supporting our families mission to give back!
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<div>God Bless. Please keep Lacey Grace in your thoughts and prayers
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Anonymous

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