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Living with Trisomy 13 - Patau's Syndrome

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Matthew Elijah Baker

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Born: October 3, 2008

  Fort Bragg, North Carolina (NC) - Full Trisomy 13    
 


My name is Danni Baker. My son's name is Matthew Elijah Baker. He was born 10-03-08. We live in Fort Bragg, North Carolina.  Matthew was diagnosed with Full Trisomy 13 after blood work. I believe they said 12 out of 12 cells. The condition was not detected during my pregnancy, which went relatively smoothly until my blood pressure went up. I can only determine it was God's will that I not find out during my pregnancy. Because of preexisting hypertension I had multiple ultrasounds and due to a mix up where my blood work got lost, I had two triple screen blood tests. Except for the fact Matthew measured a little small (which I was told was normal when mom's have hypertension) nothing looked out of the ordinary.

Trisomy 13 was suspected at birth. Matthew came into the world at 37 weeks gestation measuring 32weeks. He was in three different NICU's and came home at 10 weeks of age.

He was born with a cutis aplasia (healing quite nicely on its own), an extra digit on his right hand (since removed), malrotated bowels (repaired with LADS procedure at 10 days old), kidney reflux (grade 3 and stable), and some cardiac issues which included: LSVC, 2 medium sized ASD's, a PDA, and a medium sized VSD. Today, his heart is stable. The ASD's have all but closed, and the VSD is very small now. The PDA had closed but Matthew had a respiratory infection last month and it reopened. His cardiologist believes the VSD and PDA will close on their own but if not at 1year of age he says he can easily repair them.

He has an umbilical hernia and an inguinal hernia. He'll have surgery in April for the ingunal hernia. His brain is structurally normal. He requires a very low dose of oxygen since his respiratory infection but he'll be off of that soon.

His biggest issues are nasal congestion (ENT says his upper respitory area and sinuses are normal, it's just the season) and his bowels. He's got slow intestinal motility. He's on Reglan for motility, Zantac for stomach reflux (though he really doesn't have much of that), and Amoxicillin to guard against UTI's with the kidney reflux. He used to require suppositories twice daily to pass his bowels but for the last couple of months he hasn't needed them very much at all. It took Matthew a long time to successfully bottle feed due to his stomach issues but slowly he's gotten to be an expert bottle feeder. He's up to 7 ounces every 5 hours. He's had both breast milk and neocate formula. The breast milk has run out and now he's strictly neocate. He's turning into a little butterball and loves to eat so his doctor is thinking about trying him with extremely pulverized rice cereal.

He is now 5 months old and doing relatively well at home with his family. Just like any other baby, he smiles, he laughs, he cries for feedings and to be picked up and loved. He is in love with his big brother, Tommy, who's three. I've enrolled him in early intervention services. He gets physical therapy and his therapist thinks he looks good in that department. According to audiology, Matthew has a hearing deficit. I can't tell. His hearing seems quite normal to me. His vision is fine.

Every doctor that sees Matthew has told me that when they were told he had Full Trisomy 13 they couldn't believe it when they saw him. Outwardly, anyway, they said they couldn't tell. I don't know why that saddens me but it does. I guess every time I hear that I get this hope like maybe he doesn't really have it and the tests are wrong but reality will inevitably set in all over again. I'll just keep remembering that my hope and help lies in my God, not in what I see and hear.

Anyway, I apologize for not writing back months ago. It's just been a very very rough few months and now I am just getting a chance to breathe and catch up on some important things such as this.

Thank you for your site and the service that you are performing especially for people like my husband and I who were so lost and offered no hope after Matthew's diagnosis.

Danni Baker
dannibaker79@yahoo.com


 

 

Submitted 3-5-09

 

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All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to us directly by the families
and used on this site with their permission.

Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 
 

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