Ethan (and birth story)

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Have you recently given birth to a child with Down syndrome? 
I can probably relate to many and maybe most of your feelings. Having a child that is “different” can seem rather scary!

Go ahead, grieve and cry it out, but please don’t let those feelings of sadness overcome you. Your child is wonderfully and beautifully made and their purpose in life is much greater than what you can even began to comprehend at this very moment.

Breathe. It gets easier.

Don’t believe me? I invite you watch these videos, of a happy child that brings a happiness into our lives superior to any other happiness my heart has ever felt. No I don’t love him more than my girls, it’s just a different love. A love I would have never known existed, a love that God had put in my heart and I would have never explored it had it not been for this treasure of mine, my son Ethan.  

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Below is the mass email I sent out to inform my friends/family about Ethan’s diagnosis. I had originally written his birth story for an online pregnancy forum I was on. I wrote an intro and copy/pasted the birth story and ended it with the current status of my feelings/thoughts of that moment. 

Pregnancy & Ethan Santiago's Birth Story

Tuesday sept 8 2009
I am sending you guys a little story about our precious son Ethan.

I had posted this on one of my blogs online, and now I suppose I should share with our family and friends. It is rather long, but I encourage you all to read.


October of 2008, my husband and I decided to try for our 3rd and last child. It wasn’t a decision I was too sure about, but I knew I wanted another baby and I knew I would live to regret it if I never had my 3rd child. My husband on the other hand always wanted a big family and it was he that would forever talk about having another child.

We tried that October but I had just missed my ovulation, and since my cycle was about 43 days long, I would have to wait till december to try again. It was the longest month of my life as we were more than eager to conceive ASAP! I was due to ovulate the 1st week of December, and we tried every day, several times a day in hopes to conceive this very much wanted baby.

And our prayers were answered!

At my 1st prenatal visit, I learned that I had blood behind the placenta. My doctor stated that there was a chance I could miscarry. I was not put on bed rest since bed rest would not prevent the miscarry, I was just told to take it easy, no sex, no caffeine, no working out, no nothing... just take it easy.

I cried and I prayed. I asked the dear Lord to please let this child survive, that I very much wanted this child and to be blessed with his birth.

A few weeks went by, I was seen by my doctor weekly to make sure the baby was alive and well until the issue didn’t seem to be any issue any longer. Around 17 weeks I went in for the anatomy scan to see the sex of the baby as well as to have some blood work to check my chances for a baby with downs.

I had no worries. But in the back of my head, I had this odd nagging feeling that somehow made me think about it much more than I probably should have been. Maybe I should have known then, that it was my destiny.

the following week, I received a phone call from my doctor. She stated that there was an “echogenic bowel” that appeared in the ultrasound. She explained different things that it could be. But when she called, she had the most “I am sorry” tone in her voice that made me feel so uncomfortable. I received the call at work, where I broke down at my desk… I then looked my self in the restroom and cried, holding my stomach and heart. It was such a heart ache at the moment. She didn’t give me my AFP results as they were not in at the moment. I was hoping to hear something positive with those results. Friday of that week, I could not wait any longer and I called the doctor for my results. She stated 1 out of 37. NO! I though, God please NO! I tried to think positive and told myself that it was just a “false positive”.

I cried everyday. I prayed everyday. I did a lot of research in the mean time of Downs, I joined different forums and support groups, though I never posted I just read other people’s experiences. I tried to find some comfort. I did a lot of soul searching as well. I talked to God. I said, God please don’t let it be, but if that is in Your Will, then let it be. I will love this child unconditionally. I learned that God doesn’t give you what you cant handle. I told my self whatever I could tell myself in order to comfort myself.

We went to a specialist twice, and both times, they didn’t see anything abnormal. We opted not to have the amnio, after all who are we to say that this child does not deserve to live just because he has downs. If this is God’s will, we cannot terminate something that was meant to be. It wouldn’t have changed anything to know the truth. We were determined to have this child. And also, I will admit. we were scared to know the truth. We found some comfort in the ultrasound, as our baby appeared to be “normal”.

I personally knew that it didn’t mean anything, that our baby could still have DS. I prepared myself just in case. I kept logging in to support groups just to read. My husband was convinced that our baby was 100% ok, or maybe this is just what he told me to not show his fear. At one point for about a month, I let it go completely and just enjoyed my pregnancy. As my son’s birth date approached, I started to worry again. It’s funny though, how all of all sudden I noticed a lot more DS people, how things related to DS started to appear. Was it all a sign? Or was I just more conscious about it?

A month before my scheduled c-section, I started to have dreams about my son. In some he had DS. I told myself, no, mo way, it is just my overly active and worried mind.

Friday August 21st, the day that God blessed us with little Ethan. My doctor started on the c-section…. I was beyond nervous. I’ve had 2 other c-sections and I do not remember ever worrying so much with the 2 others.
But they werent worries of the surgery itself. I worried about whether he had DS or not.. I was scared to death. I prayed and I prayed, PLEASE GOD NO! NO NO N O! at the same time I said Dear Lord if it is your will who am I to ask for otherwise.

The doctor pulled out Ethan. He raised him up for me to see… I tried to see if I could see something abnormal from the distance. I concentrated real hard to see if the doctors would say something about Ethan. Nothing was said… I heard the nurses say what a handsome little boy he was. I did notice his arms dangling a little strange… maybe from being crammed in my belly I said to myself. After being cleaned they handed him off to my husband who then brought little Ethan to me… speechless…. he was gorgeous! OH my Goodness! Beyond belief.

I was then wheeled off to the recovery room where we waited for our little heavenly child. Instead we received a visit from the pediatrician. She walks in all serious and stern and asked about my pregnancy and complications. Yes, I told her about the echogenic bowel and the positive test results. She then let us have it, “ it appears that the baby has DS”… I took the news very well. I knew we had a good chance of that happening. After all of that, our baby was brought to us and husband was like there is no way, look at him he is perfect… I believe he was in denial.

The baby was sent off to have all sorts of test down that day. Later that day we were visited by a Geneticist, he said, it appears that the baby has DS, but until we receive the results treat him like a regular baby. I could tell my husband was very dearly bothered by all the news. I studied my baby, and I knew it… he did have DS.
I was very worried about my husbands emotional state. I worried that he would not take the news well, that he would reject the baby or not love the baby.
The whole night, my husband was very irritable and sadden. The next day he went home for a shower. He returned with a positive attitude . He said, He is my son, and there is nothing I can do about him having DS. I cant take it away or make it not be.
I thank God for reaching down to him and giving him the strength to accept it.

He had an EKG and an echo. His heart appears to be normal so far. He was feeding very well at the hospital. They let us go home that Sunday. I guess so far we have been lucky with his health, though I know we are not in the clear.

And after all these months of preparing myself, hasn’t helped to accept my reality. Maybe it’s my unstable post partum hormones that are making me feel so depressed or maybe it is the actual reality.

Part of me feels so guilty and sadden and sometimes I cant handle the truth.
Part of the truth is that I LOVE this little boy! Oh MY GOD, do I love him! I LOVE LOVE LOVE him. For a DS baby, he is amazingly precious and so sweet. My husband is totally in love with our little Ethan. And nothing is stopping us from loving him and accepting HIM. I have yet to accept his DS 100%.

I had prayed so hard that God bless us with another child, be a boy or girl… I thanked God for allowing me to carry this child and for his birth. Regardless of anything. I never felt the “why me?” Like I’ve said before who am I to say that I am too “good” to have a child with DS. I am sure all the other parents of DS children werent any any better or worse than myself.

I just find it so hard at times to accept his DS.
We havent told family yet, we are still waiting for the chromosome study results and to meet with the Geneticist. TO learn a little more and accept it a little bit more before we share the news with the family.

I am bag full of emotions, every minute I feel something different. I fight many issues in my head.

I am more than thankful to have Ethan in my life, I rather have him with DS than no baby at all, which in my case it could have happened. But I find myself a lot of times not wanting him to have DS. I want more than anything for him to not have DS. But the reality is that he does.

I pray for strength and courage.
And God has answered me.

After a week of having Ethan, I no longer cry with grief. I learned that I was mourning the son that I had envisioned in my head my entire pregnancy. letting go of the little boy I was hoping to have and accepting new hopes and dreams into our lives.

I now accept that he has DS. NOt accepting that he has it will only set me back. I dont love the fact that he has DS, but I accept that he has it.

Regardless of anything, he is my son. And we are proud to be his parents, and we have him for a reason. I dont regret him nor am I ashamed of my little boy. He might have Downs Syndrome, but it does not define who he is. He is still a baby, our baby. I look forward to raising him and providing him with the best that we can.

I ask our friends and family to support us through this journey and not turn their backs on us. Please dont feel sorry for us, there is nothing to be sorry about. We truely are blessed.



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