Photo Credit: Peiye Chung
On March 5th, 2021, I was feeling cramps, so I decided to call L&D. They advised me to come in. I thought the cramps were from not drinking enough water the day prior, but little did I know that my world was about to turn upside down.
While in triage, I indeed was having contractions. One contraction was so long that Olivia’s heart rate dropped. Code C was called. Luckily her heart rate came back up.
Later on, we decided to proceed with a C-section since I was scheduled to have one in a few weeks anyway—Olivia was in a breech position. When I woke up from the anesthetics, I had a sinking feeling that something was wrong because Olivia was not next to me.
I asked my husband to inquire about Olivia. He was gone for quite a long time, which made me further suspicious that something was not right.
Later, the neonatologist came by to tell me that Olivia was not breathing on her own and they did not know why. We spoke for awhile, but I have no recollection of what was said. I think I was in shock.
That night, Olivia had to be transferred to another hospital that had a higher level NICU. The next day we got more information about what was going in.
Olivia was on a ventilator and she could not move on her own. The best way for me to describe her is “floppy.” The doctors suspected a severe neuromuscular disorder, so they ordered genetic tests on us. It was a very long two weeks waiting for the whole exome-sequencing results.
After receiving the results, we discovered that I have a TTN gene mutation and my husband possibly has one too. This gene is responsible for coding the largest protein in the body, which is responsible for muscle contraction and relaxation.
From the beginning, we were aware that because Olivia’s condition was severe, her quality of life would be extremely low. Even if we wanted to care for her, the doctors were not sure what her life expectancy would be because she was prone to infections. It was so heartbreaking to see Olivia unable to breathe and move on her own. My husband and I knew that we did not want her to live a life like this, so we made the difficult decision of compassionate extubation.
Olivia became an angel on March 28, 2021, which was her original due date. I miss my baby so much and I know she is free of suffering.
After five months, we are still waiting for the biopsy and autopsy results to confirm that the TTN gene mutation is indeed what what caused Olivia's condition.
Mommy loves you so much, Olivia. I am looking forward to the day I can hold you in my arms again and give you endless kisses.
Thank you @little_pey_pey for sharing your story. Shared with permission.
Pregnancy and infant loss can leave grieving parents feeling isolated and unsure how to navigate the heartbreaking circumstance of living without their precious baby. Unexpecting delicately helps grieving parents navigate the complexities and heartache of life after loss.
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