When I was first told that my baby might have PRS I was pregnant. This diagnosis was made from viewing the images of the ultrasound. It was described to me as just being born with a small jaw. In fact I remember when the doctor told me that alot of people with small jaws may have a very mild case of PRS and doesn't even know it.
I remember being told that it MIGHT cause feeding issues, and that my baby might need a special bottle, and breathing issues which are common for the first few years of life. However, as your child grows and her jaw grows, they will more than likely grow out of it, and go on to have normal happy lives.
Upon hearing this I was worried...Okay worried is a lie I was freaking out! As soon as I left I did what any curious person would do. I googled it!! What I found was that Pierre Robin Sequence is a set of abnormalities affecting the head and face. Consisting of a small lower jaw (micognathia), a tongue that is placed further back than normal (glossoptosis), and blockage of the airways.
After what I read it didn't really register to me how serious this could be. Just two years prior I was pregnant with a baby boy who was diagnosed with Treacher Collins Syndrome. This diagnosis was made through ultrasound as well. I recall being told he had webbed feet, holes in the heart, undeveloped jaw, in addition to other issues.
During that year I had three heart sugeries....yes three! And was strongly advised to terminate for my health, and for the fact that my baby boy more than likely would not survive, and if he did I would really have to think about his quality of life. When this was discovered I was 20 weeks pregnant, and reaching the deadline of when I could terminate. Which gave me only two weeks to make a decision, and let me tell you when you have to decide whether or not to end a life that you are creating, a life that you want, more than want a life that you love from the moment you found out of it's exsistance. It changes you!...I battled intensely!
I battled between my beliefs ( God gave me this blessing, and ending a life he created no matter how short is murder) and my reality (The doctors know what they are talking about, can you really handle a special needs child). Not to mention the very strong opinions of others mainlly family, had me convinced of what I should do.
Although between us in my heart I did not want to let my baby go. I honestly believed that he deserved a chance to fight for his own life. I thought even if he didn't survive after birth, at least I didn't have a hand in his death.
The reality is, I chose to terminate... I told myself I was doing this for my son Jonah. That I didn't want to risk my life, and lose my son. So I went to the doctor, got an injection in my belly to stop his heart. Two days later I delivered his still body naturally with my husband and my best friend by my side.
Holding his lifeless body in my arms actually hurt worst than losing my mother. All I could think in that moment is that I just killed someone else that I loved. I felt like a murderer! This baby...this baby in my arms looked sooo perfect! To me I couldn't see anything wrong with him, and my only feeling was REGRET!!!
After regret came guilt. First I felt that I killed my mother (I'll explain later stay tuned) and now I just killed my son. We named that baby Roman Alexander. After losing him another part of me died. To add to the pain just a few weeks after we lost Roman my sister discovered she was pregnant. The depression I entered during that time was unlike any other. I couldn't understand why my sister is getting the very gift that I just lost. I called it the Era of Roman.
Nothing, and no one could get me out of it except having another baby.
I became obsessed with having another baby. I convinced myself that GOD will give me my baby back, but no matter how hard I tried it just wasn't happening.
So flash forward when I learned about Calista's condition I was not going to make the same mistake that I did with Roman. I was so happy to finally be pregnant, and to learn that her condition is only serious in the begining stages of life it gave me solace in knowing that she could live with it.
No matter what her condition was I was not letting her go.
I always wanted a daughter...and I would do anything for her.
Sure she's going to have to fight in the begining for her life when she is born, but so did I.
I remember being told that it MIGHT cause feeding issues, and that my baby might need a special bottle, and breathing issues which are common for the first few years of life. However, as your child grows and her jaw grows, they will more than likely grow out of it, and go on to have normal happy lives.
Upon hearing this I was worried...Okay worried is a lie I was freaking out! As soon as I left I did what any curious person would do. I googled it!! What I found was that Pierre Robin Sequence is a set of abnormalities affecting the head and face. Consisting of a small lower jaw (micognathia), a tongue that is placed further back than normal (glossoptosis), and blockage of the airways.
After what I read it didn't really register to me how serious this could be. Just two years prior I was pregnant with a baby boy who was diagnosed with Treacher Collins Syndrome. This diagnosis was made through ultrasound as well. I recall being told he had webbed feet, holes in the heart, undeveloped jaw, in addition to other issues.
During that year I had three heart sugeries....yes three! And was strongly advised to terminate for my health, and for the fact that my baby boy more than likely would not survive, and if he did I would really have to think about his quality of life. When this was discovered I was 20 weeks pregnant, and reaching the deadline of when I could terminate. Which gave me only two weeks to make a decision, and let me tell you when you have to decide whether or not to end a life that you are creating, a life that you want, more than want a life that you love from the moment you found out of it's exsistance. It changes you!...I battled intensely!
I battled between my beliefs ( God gave me this blessing, and ending a life he created no matter how short is murder) and my reality (The doctors know what they are talking about, can you really handle a special needs child). Not to mention the very strong opinions of others mainlly family, had me convinced of what I should do.
Although between us in my heart I did not want to let my baby go. I honestly believed that he deserved a chance to fight for his own life. I thought even if he didn't survive after birth, at least I didn't have a hand in his death.
The reality is, I chose to terminate... I told myself I was doing this for my son Jonah. That I didn't want to risk my life, and lose my son. So I went to the doctor, got an injection in my belly to stop his heart. Two days later I delivered his still body naturally with my husband and my best friend by my side.
Holding his lifeless body in my arms actually hurt worst than losing my mother. All I could think in that moment is that I just killed someone else that I loved. I felt like a murderer! This baby...this baby in my arms looked sooo perfect! To me I couldn't see anything wrong with him, and my only feeling was REGRET!!!
After regret came guilt. First I felt that I killed my mother (I'll explain later stay tuned) and now I just killed my son. We named that baby Roman Alexander. After losing him another part of me died. To add to the pain just a few weeks after we lost Roman my sister discovered she was pregnant. The depression I entered during that time was unlike any other. I couldn't understand why my sister is getting the very gift that I just lost. I called it the Era of Roman.
Nothing, and no one could get me out of it except having another baby.
I became obsessed with having another baby. I convinced myself that GOD will give me my baby back, but no matter how hard I tried it just wasn't happening.
So flash forward when I learned about Calista's condition I was not going to make the same mistake that I did with Roman. I was so happy to finally be pregnant, and to learn that her condition is only serious in the begining stages of life it gave me solace in knowing that she could live with it.
No matter what her condition was I was not letting her go.
I always wanted a daughter...and I would do anything for her.
Sure she's going to have to fight in the begining for her life when she is born, but so did I.
Don't be afraid to share your thougts. I would love to hear them
ReplyDeleteJust want to clarify. I do not think termination is murder. I am not a doctor, or a politician, and I am certainly not GOD. I am only expressing what my feelings were about my experience and my experience alone.
ReplyDelete