On May 12, 2021 at around 5:30 am my water had broke, after about maybe 2 hours of contractions. Husband and I called Labor and Delivery to let them know we were on the way. When we checked into triage, they had confirmed it was my water and confirmed that I was 4cm along. At the point, contractions had stopped but they admitted me anyways. I stayed at 4 cm for a few hours. They decided to give me Pitocin and the epidural. Took an hour and a half and three doctors to be successful. They had noticed whenever I would have strong contractions, Jacobs heartrate would drop. After about an hour of monitoring they had decided to do an emergency c section. Rewind to anatomy scan, they had discovered multiple abnormalities. Some resolved, but his clubbed foot, scoliosis, and extra skin in the back of his neck remained. When he was born, they discovered the clubbed foot and the extra skin. They also discovered that the had a cleft palate and had some trouble breathing. They immediately rushed him to the NICU, I hadn't had any time with him before they had taken him away. Down in the NICU they had put him on the CPAP breathing machine and was monitoring him closely. He was in the NICU for exactly one week, going back and forth on breathing treatments and watching closely for his eating and weight gains. They had asked if we wanted genetic testing done but we denied.
Once we got home, we had noticed that when he would cry hard (really mad) he would turn purple. Very similar to temper tantrums and the toddler would hold their breath. All doctors we mentioned it to thought it was a behavioral trait and that he will grow out of it. Until, June 9, 2021. We were getting ready to leave for a weight check. We had put him in the car (he hated the car seat, which typically led to hard crying and turning purple multiple times) and he started to cry. He started to turn purple, in which we proceeded to take him out (as we normally did, calm him down and then try again) but this time he wasn't coming back. Jacob was not catching his breath, his body turned limp and he turned grey. My husband immediately turned him over and started patting his back (milk came out) and then proceeded to CPR. We jumped in the car, he handed me Jacob and I continued with CPR. We RUSHED to the ER; I was trying to do CPR all at the same time trying to help with other cars as my husband drove. If it wasn't for my husbands quick thinking, we would've lost our little boy a lot sooner. They were able to revive him and he was intubated after the longest thirty minutes of our lives. We were finally able to get him to the hospital for our correct insurance, and he was admitted. They immediately started trying to find us answers that we've been trying to search for since he was taken home.
He spent little over a month in the PICU, a few coding incidents, MULTIPLE occasions of turning blue (sometimes really purple), and toooons of sleepless nights. They tried a nose cannula, CPAP machine, and ultimately ended in a tracheostomy. But he still had coded couple times, leading to doctors to scratch their heads. When we got to the hospital, we had finally agreed to have a genetic test done to see if there is a culprit behind everything. After many tests (CT scans, MRI, ultrasounds, X-Rays, broncho scopes, many blood drawn, and contacting other hospitals) the doctors had to give us the news no parent wants to hear. And we had to make the hardest decision no parent should have to make. His settings on the breathing machine were too high for an infant of his size and it wasn't something he can live off of and live a comfortable life. The setting he was on is as if you're sticking your head out the window while driving on the freeway. There was also fear the high setting can possibly pop an airway.
As we were still waiting for genetic testing, we had brought family up to meet and say they're final goodbyes.
Genetic testing had finally come in and we got the answer we had been searching for. Jacob had a rare form of Acampomelic Campomelic Dysplasia. One would typically see this as a skeletal disorder, and associated with dwarfism. But with his rare form of the disorder, all the abnormalities that he had all aligned with the disorder. Cleft palate, extra skin behind neck (nuchal fold), clubbed foot, tracheo/bronchomalacia, failure to thrive, lung failure leading to infant death. His lungs were closing on him every time he cried, and as he was getting bigger they were still too small to even breathe normally. We had, unfortunately, felt more confident in our decision, even though selfishly we wanted to keep him around with us. But that would mean heavy sedation and being constantly uncomfortable, which can also lead to maybe him not coming back from a bad "episode" and him coding out, or him losing brain and muscle function from being on heavy sedation.
July 13, 2021 at 1:59 pm our Jacob had went to heaven. We had spent the night sleeping with mama and dada in the same bed as him. I was able to hold him on my chest, haven't done that in a month, and we slept the majority of the morning together. The doctors had given him heavy sedation the night before so he wouldn't be aware of what was happening. At 1 oclock, they had taken his trach out, turned off the breathing machine, and gave him more meds to help with the hunger for air. He spent his last minutes being held my mama and dada and was listening to his favorite song that would help him calm and go to sleep. Mama and Dada were loving on him kissing him and praying with him. It wasn't until dada said Amen that he took his last breath with us. 1:59 pm he was confirmed gone and our lives were forever changed. I held onto him tight as I wasn't ready to let him go just yet. I cried and prayed, watched them give him his final bath and we said our final goodbyes.
I'm at a loss for words as to why our little boy was taken away from us so soon. We won't experience firsts with him (we did experience his first smile), holidays, and memories. 9 months of planning and preparing for his arrival, all taken away from us just two months and 1 day after his birth. We were only home with him for 3 weeks. I wasn't able to hold him as much as I wanted, we couldn't cuddle, we couldn't feed him (tube fed), we couldn't hear his cries or baby talk (trach), we couldn't bond like we were supposed to. A piece of us was taken away, our little family will never be complete. We're lost.
March of Dimes fights for the health of all moms and babies. We're advocating for policies to protect them. We're working to radically improve the health care they receive. We're pioneering research to find solutions. We're empowering families with the knowledge and tools to have healthier pregnancies. By uniting communities, we're building a brighter future for us all.
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