My son had 3 holes in his heart and was Down Syndrome

Namadi
Posted April 4, 2019 from Kenya

I am a mother of 3 children, a community developer with a focus on child rights, child protection and public participation. In 2014 I was very excited to be pregnant with my second child Chris, but I was not able to carry my pregnancy to full term, at about 7months my son threatened to come out. It started on the 26/7/2014 morning where I saw a brownish discharge coming out, being an informed mother, i quickly rushed to clinic to have it checked out. The doctors checked me out and pronounced that I was 2 centimeters dilated, I was a bit confused since delivery of baby Chris was not in my mind at all, in fact, his due date was 2.5 months away. I asked the doctors to try and ensure baby Chris stayed in the womb a bit longer. They told me they have given me some tablets to delay delivery, but i think they just wanted to calm me down, for immediately after, they asked which hospital I preferred to deliver in if it happens!. I didn't understand all the fuss they were doing, after informing them the hospital, they put me in an ambulance and rushed me there with sirens!, i started feeling uncomfortable. At the hospital, I was checked and the nurses instructed to monitor me.

Personally I was sure I will be discharged the following morning and go home, but Chris would not have it!, at around 1.00am on 27/7/2014 he decided to come out. This is after a long process of scans to check his heart beat which had gone down up to 90 beats, actually the doctors had advised that I be done for CS urgently to save the boy. But my champion decided to pop out as I was being wheeled to the theater ( I believe the doctor was disappointment because he was called from his sleep at 1 am) Chris immediately cried was cleaned and delivered to me. He was the cutest tiniest baby i have ever seen. 2.1kg, after 2 days we were discharged and I took Chris home to meet his sister, I was tired and ready for some rest.

After a few weeks I took my son to hospital because of a blocked nose, the doctor was a very nice young man, he asked about my pregnancy, delivery and even showed me how to hold Chris and breastfeed him!. He wanted to know how long I stayed in hospital and if I was told or noticed anything about my son. I  informed him that I was told nothing and that my son was perfect. He called my husband and I close and started showing us features on my son I have never noticed. For one, the baby was very tiny, he had small eyes, nose, mouth and ears, and the spacing between his big to and the next was very wide , these were features related with a child with Down Syndrome, also on listening to his chest, there was noise coming from it, he called it a murmur. This mostly signified that there was a problem with the heart and hence needed further check up. He said often a child with Down Syndrome, also had issues with the heart.

I listened to this doctor wondering what he was talking about, yes my son was small, so are all babies, Chris was the cutest tiny little baby I have ever seen and yet he was calling him names. Not that i didn't understand what he was saying, but my heart was not accepting it. He sat us down and talked to us and what options we had. H e wrote us a letter to go see a pediatric cardiologist for further evaluation. My husband held my hand, looked into my eyes and told me it will be fine. We took our son home, the mood was very pensive in the car, we were wondering what next, one thing i knew was that i needed to sit down and have a discussion with google, i needed to do due diligence and understand what the doctor was saying....

Comments 14

Log in or register to post comments
Jill Langhus
Apr 04
Apr 04

Hi Namadi,

Welcome to World Pulse:-) Thanks for sharing your very personal story with us. It sounds like it was a very challenging time for you. How are you now with knowing that your son has Down Syndrome? Do you have any community support or friends with similar challenges? You may want to reach out to other women in the community who can really relate to what you're going through, and provide you with additional support, should you need it? Like Tola, in Nigeria, who was so inspired by her son who has Down Syndrome that she created an NGO around the cause. She is running a 3 day online mentorship class for women living with Down Syndrome children. This is the link to her "Resource" post about this, in case you're interested: https://www.worldpulse.com/community/users/tola-morainbow/resources/90197

I'm looking forward to seeing more stories from you and learning what you're passionate about.

Hope you have a great day!

Merlin James
Apr 05
Apr 05

Dear Namadi,
Welcome to World Pulse !
I am glad to see you here, at the same time, I am just thinking.....very little did I know about your story when we were together at Coady, you were such a vibrant woman cheering up and now I see more strength in you to share this story with us. Hope you received the support and information and are able to get steady with the situation.
Much love dear sister !
Merlin

Namadi
Apr 08
Apr 08

Merlin!!!,
Hi, my story is a positive one and i already have victory. My son is growing up well and already going to school. Thank you

Bettina Amendi
Apr 05
Apr 05

Welcome Namadi,Thank you for your story.Be strong.

Namadi
Apr 08
Apr 08

Hi Bettina,
I am strong, am writing to encourage others who may be going through the same

Bettina Amendi
Apr 08
Apr 08

Thanks Namadi,confession brings possession.I am a World Pulse Ambassador for Kenya and would like to be engaged with you further.

Namadi
Apr 08
Apr 08

Bettina,
That's ok
Regards

Dawn Arteaga
Apr 06
Apr 06

Thank you for sharing this beautiful story. I can’t wait to hear what happened next. I feel for you and know that Chris is so lucky to have such a fiercely loving and smart mama. Please keep sharing your story on World Pulse! Grateful to get to know you through this forum. Best, Dawn

Namadi
Apr 08
Apr 08

Hi Dawn,
Thank you for the encouragement, yes I will continue to write, my story has an amazing ending

otahelp
Apr 06
Apr 06

Dear Namadi, Down syndrome is the end of life. yes its difficult to cope, accept and live with but of course for the love of your child you will not give up on him. its been 5 years and i know you must gained so much knowledge on how to live with it and care for your child. i love your strength and i believe you have more strength in you to see you through this hard time and trial. please keep up with us so we learn with you just as you learn from us in this journey. you are not alone

Namadi
Apr 08
Apr 08

Hi Otahelp,
I believe you meant '......it's not the end of life'. My desire for writing is so that i can share my experience and tell others it's possible

Tamarack Verrall
Apr 08
Apr 08

Dear Namadi,
What a beautiful story of courage and love. I look forward to learning more from you and hope that the journey is continuing smoothly. I love your description of your husband's immediate response. I have experienced the pure love that Downs Syndrome children give out.

Namadi
Apr 30
Apr 30

Yes Tamarack, Chris is always kissing me and his siblings. He is the most adorable baby in the world!

chimdirimebere
May 14
May 14

Hi Namadi,
I feel your joy. You are an overcomer. You are indeed a warrior. Keep it up.
Harriet