A few years ago, being pregnant with my 3rd child. I was forced to make a life changing experience. At 5 months, I went in for my ultrasound appointment. While doing the ultrasound, the doctor expression gave me a clue that something was wrong. He noticed that my child only had two instead of four heart chambers. While continuing the ultrasound, he noticed 2 dark marks on my unborn sons brain. He immediately sent me the next day for an amniocentesis. I didn't get any sleep that night. I actually cried off and on the remainder of the night. I went to my appointment, got my amnio and waited for the results. My son was diagnosed with Trisomy 18.
What is trisomy 18?
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a error in cell division, known as meiotic disjunction. Trisomy 18 occurs in about 1 out of every 2500 pregnancies in the United States, about 1 in 6000 live births. The numbers of total births increase significantly when stillbirths are factored in that occur in the 2nd and 3rd trimesters of pregnancy.
Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.
At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.
Some children will be able to be discharged from the hospital with home nursing support for their families. And although less than 10 percent survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families, reaching milestones and being involved with their community. A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independantly without assisted caregiving.
After researching and knowing the facts, I had to make the biggest decision of my life. I was also told that they wouldn't do open heart surgery on a newborn and that was if he lived that long. I cried for the next couple days, knowing that my decision would be to deliver him and not allow him to be in anymore pain. Feeling him kick me inside while driving to the hospital to deliver him was the worst feeling anyone can ever experience. After delivering him, I just held him and prayed with him cuddled in my arms. The doctors seemed shocked that I didn't want them to take him out the room. He eventually passed away 2 hours later.
I'm telling you one of my stories today, to maybe help another mother who may be going through the same thing. I can say, the hurt doesn't go away but the healing gets better each time I'm able to share my story. As I mentioned before, you never know what someone may be going through. Some find a way to find strength and peace through prayer and support. Having to go through this horrific experience has made me such a stronger person. It's made me look at life differently. I value my healthy kids that God has allowed me carry and nurture them full term! We have no control over our lives, He does. In the end, I know that I've made the right decision. I know that my little boy is watching over me each day.
RIH son, mommy will always love you!
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