u/mailgirl12345

I've been asked this a few times. I did know and today I told someone that yes I knew at 12 weeks but I don't consider 3 months early.

I feel it is intrusive and sometimes feel it comes with an agenda, they are wanting to know so they can work it all out or that person is surprised that I continued on. I'm in Australia where they abortion rate of babies with a prenatal diagnosis with DS is over 90%.

What do you all say? I've been thinking I may say next, "yes but what do you do with that information?" To probe the person to think a bit more and back off with their question.

A year ago tomorrow I took a call from my doctors surgery when I was at work. I was told the NIPT results were back and that there was a high risk of Down Syndrome. I went into shock, unable to process what I'd been told, filled with instant fear. I told the doctor I had to go and hung up. I then called my husband in tears. He tried to be strong and calm me down. Later he told me that after speaking with me he put down the phone and cried.

A week later we went in for an 12 week scan, there was more shocking news. The heart looks very bad the Maternal Fetal Medicine (MFM) specialist said. The left side looks too small to function and will be life limiting. She told me it will be incompatible with life and "we don't say this very often".

I told them I wanted the amnio to confirm the DS. They seemed surprised. At the 16 week appointment just as she was about to put the needle in I was asked, "are you sure you want to we don't need to you can just go ahead and terminate". The DS then came back as confirmed.

At the 17 week appointment I had a fetal cardiologist review the heart. He said it will be a single ventricle heart, left side not able to function. Similiar to HLHS but with half the chance of survival of a typical baby with HLHS. Both the cardiologist and MFM pushed for termination. "Do you want to do this to him?" The MFM seemed annoyed that I had continued on and was struggling with the thought of terminating my child. "We wouldn't have had so many meetings with you if it was just the DS, this baby is a very sick". At this same meeting I told the doctors, "I know he doesnt have a chance but I want to give him one", they seemed to scoff at this "he doesn’t have a chance". I agreed with them "I accept that he doesn't have a chance, the moral thing to do is to give him one regardless".

Everyone around me thought termination was best. My husband said "its clear what they (doctors) think". I would helplessly tell him they were the experts on medicine not morality. The social worker at the hospital would talk to me about the impact on my older but very young (1 year old) son. How will all of this affect him?

I was tormented, felt trapped with no good option and a ton of pressure to end his life. The thought of ending the life of my baby made me sick. I couldn't imagine doing it, booking in the appointment and doing it. It felt like the most wrong thing in the world. I never wanted it on my conscience, the taking of a life. It felt like if I chose to kill him, nothing else would have meaning to me. If an innocent human being, my son, can have his life ended because he is different, will my life or anyone else's have meaning at all?

This would be hard on me, but this little human being gets one shot at life. How could I rob him of all his future experiences? How could anyone assume his experiences be less than because of his disability? Are we all equal human beings or not?

The other two pathways seemed insurmountable. Comfort care seemed torturous, giving birth to a baby at full term to watch it die. I was scared and grieving my baby already.

The surgery pathway also seemed torturous, months in hospital, three major heart surgeries, need for a heart transplant long term. Only 'palliative' in a sense that they could not fix the heart only manage it. A 10-30% chance of survival till age 5. Compounding disability likely on top of the DS if my baby survived.

Then at 27 weeks everyone including the cardiologist got a shock. My baby might have a slight chance of being a biventricular repair. Much better survival if that ended up being the case. Only two surgeries and a permanent fix. It was the talk of the MFM ward. I was asked again whether I wanted to terminate. They could induce birth now and let him die naturally (comfort care) or they could inject his heart. We declined saying it was not right to take his chance away. That chance that they were so sure he didn’t have just 10 weeks ago.

Then at 31 weeks the chance became 50/50 for biventricular repair.

Then at 35 weeks it was almost certain to ne biventricular repair. I cried in amazement on the way home. It felt like God was with us. The enormity of what i'd done for my son hit me. The pressure and trauma and resistance i'd felt for so many weeks released into a flood of tears and relief, I felt like I had saved him.

Then he was born at 37 weeks. He is beautiful. All children are but my son, this special boy is particularly beautiful.

He got through his heart surgery at 4 days of age, spent 4 months in hospital and now we are home.

Life is precious. We only get one chance. I had to tell my self repeatedly through my tears and self pity and fear and feeling trapped for months on end "you put HIM first, you put HIM first". I feel like I did that. I dont think I'll ever do anything as meaningful in this life as what I went through for him. I'll get to the end of my life with peace in my heart and my beautiful boy will have his life.

A year ago tomorrow I took a call from my doctors surgery when I was at work. I was told the NIPT results were back and that there was a high risk of Down Syndrome. I went into shock, unable to process what I'd been told, filled with instant fear. I told the doctor I had to go and hung up. I then called my husband in tears. He tried to be strong and calm me down. Later he told me that after speaking with me he put down the phone and cried.

A week later we went in for an 12 week scan, there was more shocking news. The heart looks very bad the Maternal Fetal Medicine (MFM) specialist said. The left side looks too small to function and will be life limiting. She told me it will be incompatible with life and "we don't say this very often".

I told them I wanted the amnio to confirm the DS. They seemed surprised. At the 16 week appointment just as she was about to put the needle in I was asked, "are you sure you want to we don't need to you can just go ahead and terminate". The DS then came back as confirmed.

At the 17 week appointment I had a fetal cardiologist review the heart. He said it will be a single ventricle heart, left side not able to function. Similiar to HLHS but with half the chance of survival of a typical baby with HLHS. Both the cardiologist and MFM pushed for termination. "Do you want to do this to him?" The MFM seemed annoyed that I had continued on and was struggling with the thought of terminating my child. "We wouldn't have had so many meetings with you if it was just the DS, this baby is a very sick". At this same meeting I told the doctors, "I know he doesnt have a chance but I want to give him one", they seemed to scoff at this "he doesn’t have a chance". I agreed with them "I accept that he doesn't have a chance, the moral thing to do is to give him one regardless".

Everyone around me thought termination was best. My husband said "its clear what they (doctors) think". I would helplessly tell him they were the experts on medicine not morality. The social worker at the hospital would talk to me about the impact on my older but very young (1 year old) son. How will all of this affect him?

I was tormented, felt trapped with no good option and a ton of pressure to end his life. The thought of killing my baby made me sick. I couldnt imagine doing it, booking in the appointment and doing it. It felt like the most wrong thing in the world. I never wanted it on my conscience, the taking of a life. It felt like if I chose to kill him, nothing else would have meaning to me. If an innocent human being, my son, can have his life ended because he is different, will my life or anyone elses have meaning at all?

This would be hard on me but this little human being gets one shot at life, how could I rob him of all his future experiences? How could anyone assume his experiences will be less than because of his disability? Are we all equal human beings or not?

The other two pathways seemed insurmountable. Comfort care seemed torturous, giving birth to a baby at full term to watch it die. I was scared and grieving my baby already.

The surgery pathway also seemed torturous, months in hospital, three major heart surgeries, need for a heart transplant long term. Only 'palliative' in a sense that they could not fix the heart only manage it. A 10-30% chance of survival till age 5. Compounding disability likely on top of the DS if my baby survived.

Then at 27 weeks everyone including the cardiologist got a shock. My baby might have a slight chance of being a biventricular repair. Much better survival if that ended up being the case. Only two surgeries and a permanent fix. It was the talk of the MFM ward. I was asked again whether I wanted to terminate. They could induce birth now and let him die naturally (comfort care) or they could inject his heart. We declined saying it was not right to take his chance away. That chance that they were so sure he didn’t have just 10 weeks ago.

Then at 31 weeks the chance became 50/50 for biventricular repair.

Then at 35 weeks it was almost certain to ne biventricular repair. I cried in amazement on the way home. It felt like God was with us. The enormity of what i'd done for my son hit me. The pressure and trauma and resistance i'd felt for so many weeks released into a flood of tears and relief, I felt like I had saved him.

Then he was born at 37 weeks. He is beautiful. All children are but my son, this special boy is particularly beautiful.

He got through his heart surgery at 4 days of age, spent 4 months in hospital and now we are home.

Life is precious. We only get one chance. I had to tell my self repeatedly through my tears and self pity and fear and feeling trapped for months on end "you put HIM first, you put HIM first". I feel like I did that. I dont think I'll ever do anything as meaningful in this life as what I went through for him. I'll get to the end of my life with peace in my heart and my beautiful boy will have his life.