Our pregnancy started off as many others did- the tracking, praying, hoping, and finally, multiple tests later, the word “pregnant.”  You become naive to anything more than potential minor bumps in the road occurring during your pregnancy journey.  I felt great majority of my first trimester, aside from the typical nausea and fatigue.  We found out the gender prior to our anatomy scan so leading up to February 2, 2023 we were so anxious to see our sweet little baby girl.  The scan started off fine, the small talk, typical questions, then the silence.  The multiple requests to go to the bathroom as the ultrasound tech thinks “my bladder is too full” and impacting view.  She leaves the room with each bathroom use and finally after the third time of this routine we knew something was terribly wrong.  The tech stops, hands us the pictures she printed of our sweet girl, and said “I saw some things that are concerning.  I am going to go get the doctor.”  After about 30-45 minutes of waiting in our room, what seemed like hours, we were called into an office and our world shattered before our eyes.  Our sweet little baby girl was found to have a congenital diaphragmatic hernia (CDH) and an omphalocele.  We had absolutely no idea what those words meant and it was then that it felt like our whole world had been swept out beneath our feet.  

After the initial shock wore off, our absolutely wonderful MFM doctor, Katherine Wolfe, referred us to Cincinnati Childrens Hospital for a second opinion, and later determined, Meira’s delivery and postnatal care.  Her kindness and empathy during that devastating moment is something we will never forget.  She assured us by saying “If this was me and she was my baby, I would go to Cincinnati.  So then started our journey of 3 and a half hour commutes to/from Akron, Ohio to Cincinnati.  After three visits with more tests and meetings than one could imagine between there and back home, we had a plan for our little fighter girl  Our little MEIRAcle.  

At 32 weeks, we relocated to Cincinnati, Ohio with the medical teams expected time frame of 6 to 9 months, I know, we were shocked too.  However, we were going to do whatever was absolutely best for our daughter.  On June 20, 2023 our beautiful, perfect little baby girl Meira Grace Aikens made her grand entrance into this world via cesearean section with 40 plus people in the operating room.  She was finally here!  Meira’s birth plan was complex and involved many caring and well trained professionals.  Best of the best in the nation! (No really!  On Meira’s birthday Cincinnati Childrens Hospital was named #1 children’s hospital in the nation!)  She was intubated upon birth with placental support and within a few minutes placed on ECMO to allow her lungs to rest that were significantly impacted by the CDH.  After my MFM tended to me and completed my abdominal incision, I was whisked away to recovery, with empty arms and a heavy heart.  I knew my baby girl was in the best hands, but I couldn’t help but feel robbed of the typical post birth experience.  No baby’s first cry, no skin to skin, no feeding, no cuddles, just a quick look over at her surrounded by multiple doctors and nurses as I was rolled out the operating room doors.  It was about 4 hours until we were finally able to see Meira.  My sweet girl enduring so much within such a short time of her arrival into this world.  It was completely unfair and heartbreaking.  We were able to touch her, hold her hand, but limited to much more.  It was a relief to finally see her and I hope to this day she felt relief in that moment when her mom and dad were finally there.  Due to my recovery, I had to return to my room for pain meds and nursing care after approximately one hour of visiting.  We returned a few hours later to more news that we were always told was a potential but never imagined would happen to our baby, after all hasnt she been through enough?  The lead cardiologist entered the room and demanded our attention stating “this is life or death for your child.”  He informed us that Meira would need to be transferred immediately to the CICU due to during her routine ultrasound of her heart, the discovered a blood clot forming in her left ventricle.  They needed to administer blood thinner likely in the amount required for a 6-7 month old in order to clear it.  So off we went to CICU.

The next two days were filled with anxiety and fear, but also joy. Our baby girl was here, fighting strong, and nothing else mattered. We spent our time going back and forth between my hospital room and Meira’s bedside. It was a whirlwind, and much of it is still a blur. But after three days, the cardiac team informed us that, by the grace of God, the blood clot was gone! Meira was transferred back to the NICU that evening to rest and prepare for her CDH repair surgery two days later.

The next day, I was discharged from the hospital. It was bittersweet—being close to her was comforting, and leaving was hard, especially since I forgot my pain meds upon discharge. We spent the day by her side, reading to her and talking to her. Having her eyes open to stare at Mommy and Daddy was absolutely wonderful. That evening, she started to get agitated, we met with the doctors, and we were comforted that she needed rest after all she had experienced thus far. Around 8:30 p.m., we decided to go home, get some dinner, and rest before her surgery.

Throughout my postpartum recovery, I pumped every three hours. It was the one thing I could control, the one thing I could provide for Meira. Though she couldn’t feed orally, we used my milk for oral care, and it reassured my heart to know she loved it.

I remember waking up at 3 a.m. to pump and then getting comfortable in bed. At 4:02 a.m., Brian’s phone rang, “It is Dr. Robby…” and our entire world went dark. Thirty minutes later we returned to her bedside to learn that during a routine head scan, they had found that Meira had bilateral grade 3 and 4 brain bleeds. The specialist and lead physicians were awakened and returned to the hospital throughout the early morning. Our tragedy preparation meetings from April and May were becoming a horrific reality.

All we could do is pray and love our sweet girl. Around 5:30am we reached out to one of our Pastor’s, Paul Wides. The room was cleared, and the Holy Spirit was present along with Meira, and Mom and Dad. Pastor Paul led us in beautiful prayer, and welcomed Meira Grace to the church, and we dedicated Meira to God’s will. We are comforted knowing Meira is a child of God. 

About a half hour later, Meira’s lead surgeon asked us to meet with the Neurology team, and suggested we stop the ecmo treatment immediately as it was causing more discomfort than helping. Brian went and viewed the scans and can vividly recall the images. The advice of the team was to call loved one’s and enjoy as much time as we could with Meira. They told us to hurry as around noon, maybe 3pm, we would be saying our last goodbyes. 

June 25th was a melancholy yet beautiful day with Meira. Our families began to arrive at the hospital and endeavor drives from hours away. The Fetal Care Center and Child life specialist team were compassionate and kind. We enjoyed continuing to build Meira’s beads of courage, create hand and footprints, moldings, and have a song with her heartbeat created synchronized with the popular Christian/country song talking to Jesus. Family members could hold Meira without all but a breathing tube and could spend special time reading to her. We took many special photos and videos that we will cherish forever. Meira Grace experienced a constant abundance of love and connection with loved ones. 

We are thankful that Meira proved her strength and by 4pm story time, prayers, and memories were recognized. It became harder and harder for mom and dad (Anne and Brian) as family members were suggested to head out. A little after 5pm the hospital’s Priest lead the family in prayer followed by the remaining time of mom and dad holding Meira and saying goodbye. It was 6:30pm when Meira was completely free of any support (not even a breathing tube). We were told it would only be a few minutes. Meira showed her strength and her chest moved in sync with Brian’s for 23 minutes. We have complete confidence if it was not for the heart clot, or brain bleed, Meira’s lungs were strong enough and would have overcome her CDH surgeries in the days to come.

At 6:53pm on June 25th, Heaven gained an angel in Meira Grace Aikens.

When we left the hospital it was raining. 10 minutes later at 8:20pm when we pulled into our Airbnb, the Heaven’s opened up!

Read Meira’s Obituary