“I begged to hold my son.”
Tre Avin Spiehs-Garst, 2/21/1997 – 2/22/1997, Partial Trisomy 18, Omaha, Nebraska
Our son was diagnosed with partial Trisomy 18 at 27 weeks gestation. He was found to have a two vessel umbilical cord, cyst in his brain, rocker bottom feet, and micrognathia. His diagnosis was confirmed with an amniocentesis. He was born at 40 weeks after an induced labor. We had NICU staff present in his room at birth. He weighed 6 pounds 9 ounces and was 20 inches long. He was born struggling to breathe when laying flat. I vividly remember asking the doctors if he was breathing after he was born. They said he was, but he was taking very shallow breaths. I begged to hold my son. As they placed him in my arms, he began to pink up and he started to cry. The doctors and nurses looked at him stunned, and an x-ray was immediately ordered to figure out what was going on into of his little body. He was found to have a right sided diaphragmatic hernia. He did not have a right lung, and only a small portion of his left lung developed. His liver and intestines were in his right chest cavity. We held and loved on our beautiful little boy for 5 hours before the neonatologist suggested that he be transferred to NICU for IV fluids. This is a decision that I have regretted since. His anomalies were severe, and there was nothing we could have done to fix them and make it easier for him. We opted to send him to NICU because we were told that we could face neglect if we did not administer hydration. Our son went through 8 IV sticks before one could be obtained. By the time his IV was secured, he was turning grey. We watched him grow weaker and his breathing slowed. Tre blessed our lives in our arms for 9 hours. We celebrate his birthday every year , and we look forward to the day that we will get to meet him again.
14 years later (2011), our son Emerson was born with the same condition as his big brother. His story is also on SOFT’s page.