Friday, December 5, 2008


Almost 5 months ago, I gave birth to a baby boy. Shortly after he was born, we were shocked and devastated to learn that he has Down syndrome. I have spent these last 5 months on a path of coming to terms. It's been a bumpy road, taking me back and forth between acceptance and self-pity, and fear, and hope.

Today I got a call from my midwife. Our relationship has evolved into a friendship that includes confiding in one another. She was upset and told me that a client of hers lost her baby today at 32 weeks gestation. They are on their way to the hospital right now to have an ultrasound and determine the next step. The parents will have to decide whether to let nature take its course and wait for labor to begin on its own, or to induce labor now. Either way, the parents will be faced with a baby who will never draw its first breath.

I don't know the whole story right now, but I do know that it's not the first fetal demise that my midwife has been faced with. If you attend enough pregnancies and births, the law of averages dictates that these things will happen. Sometimes babies are conceived with an extra chromosome, and sometimes babies die before they even get a chance to be born.

I don't have any right to feel sorry for myself. We will be faced with challenges and, no doubt, heartbreak, with Finn, that are unique to Down syndrome. But Finn breathes. He will walk and talk and smile and laugh and hug and love and grow and do all sorts of other things. We are very, very fortunate.


My name is Sarah said...

Hi Lisa, This is Joyce. Perspective - that is such an important concept isn't it, and a help to all of us at one time or another.

We have a family in a more rural area of Northeast Ohio that has a five week old daughter, Nicole, with Ds. She is reaching out for information and other young mom's to talk to. I hope you don't mind that I sent her an email with your blog address. You truly have done the most outstanding job of documenting the emotional journey that I have ever read. It is so beautifully written and genuinely real.

Carla said...

Perspective is right. Finn is with you, he is healthy. You will see him smile and grow and learn.

I had a patient who came in this week because she wasn't feeling the baby move. Her AFP had shown a 1 in 11 chance of DS, and the US showed a ventricular septal defect, which isn't uncommon with DS. Her baby died at 29 weeks.

While it may be a hard road with Finn, be thankful that he is healthy and happy. It could have been so much worse.

Momto4 said...

Hello Lisa ~ I can only tell you my perspective, & my story. We lost our firstborn baby girl at full-term. I would do anything to hold her in my arms, see her walk, & talk to her. My heart aches for her every single day and she would be nine. There is not a day that goes by that I think, wish, hope, dream of what our life might be like with her. But she taught me more in 9 months than I can ever write in words here. Life is precious, so very precious.

Finnian is a gorgeous little boy, Healthy and Happy!! Perspective is so important!!

Laurie said...

I agree, Lisa.
I think that while Dylan was in the OR during his OHS, the whole Ds thing really didn't matter much to me anymore. That whole ordeal gave me lots of perspective, for sure. The ONLY thing that I cared about was being able to hold my son again. And seeing him smile up at me.
: )

Tara Marie said...

I believe that everything in this world happens with a purpose. While it is one of the saddest things I could imagine, loosing a baby so far along [I lost a sweet little girl at 20weeks] but my sister's little boy was born sleeping at 38 weeks.....and I know her journey was a much more difficult one than mine, similar, but different. For me, the loss made the gift of Emma Sage even more from the beginning I held on tight to my unborn child, so when Down syndrome entered into our journey around 12 weeks, that was the least of my concerns. For my sister, she is a L&D nurse and her loss has resulted in the gift of compassion for other parents facing the same journey. She is now called to attend all the births of little ones who were called home before they were born.

I know your midwife brings with her years of knowledge, compassion and love when she faces this facet of her job [my second oldest daughter is looking towards a degree as a nurse/midwife] and I know that her relationship with you is one facet that has enriched her lifes journey, both as a woman and as a midwife.

My love goes to that family during this difficult time.

Nick McGivney said...

I have a very good friend who lost a baby similarly - at 38 weeks. Every time I think of my small losses hers jumps to front of mind. And all had been going so perfectly,but then she knew she'd have to deliver a baby who would never breathe. And like you, I feel no right to self-pity. But it's not wrong. It just means that we have blessings that sometimes do a damn good job of disguising themselves.
I hope you don't mind if I link to you...