Reading this I'm numb, what a hard thing to go through, how did we ever get through this past year?
More than just a broken heart
Yesterday was a day of all answers, it is the worst case scenario.
The echo cardiogram told us Lainey did indeed have a genetic heart defect called Hypoplastic Left Heart Syndrome. Dr. Amanda Cook basically explained there were treatment options available if Lainey was an otherwise healthy baby, meaning if she did not have additional chromosomes.
Those treatments are:
1. Surgery within the first 3 to 5 days of life.
2. A second surgery within 3 to 5 months of life.
3. A third surgery within 3 to 5 years of life.
4. A total heart transplant in the teenage years.
Dr. Cook then explained that if Lainey had Trisomy 18 (a 3rd Trisomy 18 Chromosome) surgery would not be offered. Given what is known about Trisomy 18, medically speaking surgery would not change the eventual outcome and would put a baby through unnecessary suffering.
Dr. Cook mentioned the findings of Lainey's right arm, then possible suggestion the left hand was cupped, and having this sort of heart defect all point to signs that Lainey may have Trisomy 18.
She of course said all the "I'm so sorry, please call if you have more questions..." and I went to the car and cried.
When I got home I had a missed call from our Genetic Counselor Jean St. John. I knew she had the results of the cell free DNA test I had done last week.
I called her back and she asked about my appointment with the Echo, I told her:
"Well, I didn't get good news from them, and I am not expecting to get good news from you either".
Jean said, "It's not, Lainey tested with 99% certainty for trisomy 18".
(Just like that, it's over)
The echo cardiogram told us Lainey did indeed have a genetic heart defect called Hypoplastic Left Heart Syndrome. Dr. Amanda Cook basically explained there were treatment options available if Lainey was an otherwise healthy baby, meaning if she did not have additional chromosomes.
Those treatments are:
1. Surgery within the first 3 to 5 days of life.
2. A second surgery within 3 to 5 months of life.
3. A third surgery within 3 to 5 years of life.
4. A total heart transplant in the teenage years.
Dr. Cook then explained that if Lainey had Trisomy 18 (a 3rd Trisomy 18 Chromosome) surgery would not be offered. Given what is known about Trisomy 18, medically speaking surgery would not change the eventual outcome and would put a baby through unnecessary suffering.
Dr. Cook mentioned the findings of Lainey's right arm, then possible suggestion the left hand was cupped, and having this sort of heart defect all point to signs that Lainey may have Trisomy 18.
She of course said all the "I'm so sorry, please call if you have more questions..." and I went to the car and cried.
When I got home I had a missed call from our Genetic Counselor Jean St. John. I knew she had the results of the cell free DNA test I had done last week.
I called her back and she asked about my appointment with the Echo, I told her:
"Well, I didn't get good news from them, and I am not expecting to get good news from you either".
Jean said, "It's not, Lainey tested with 99% certainty for trisomy 18".
(Just like that, it's over)
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