Monday, March 9, 2015

Happy Birthday, Brayleigh (A Note from Dad)

Birth. Nailed It!
This past weekend was extra special because our daughter Brayleigh celebrated five months of life! 
Five months ago, on October 8, 2014, our lives were forever changed by the early arrival of Brayleigh Christine Richard. Weighing a bit less than four pounds, with underdeveloped lungs, a hole in her heart and most challenging of all a rare chromosomal disorder known as Edward’s syndrome, Brayleigh’s arrival and early days were far from routine.  We heard all of the things that no parent ever wants to hear.  We were told of devastatingly high mortality rates, extreme birth defects and severe developmental delays.  Emotionally, it was the most challenging experience of our lives.  Most difficult of all were the constant reminders, from otherwise well-meaning caregivers, that Brayleigh might not make it out of the NICU.  We were told that her condition was “incompatible with life.”  I am happy to report that God had a different plan!
Only God knew that five months later, our precious daughter would more than survive.  She would thrive!  Brayleigh now weighs ten pounds and has a double chin and rolls of fat on her thighs to prove it.  She is on a special formula that is easy for her to digest and she is responding well to it.  She is able to swallow small quantities and we are optimistic that with therapy she may be able to come off of her feeding tube.  While still on supplemental oxygen, Brayleigh can maintain her oxygen level for long periods of time without the extra oxygen.  Doctors are hopeful that the small hole in her heart will close on its own.  If necessary, as she grows and continues to gain strength, the hole may be closed surgically.
These months have not been without their challenges.  Since coming home, Brayleigh has been re-admitted to the hospital twice; once for over a month. We have been faced with difficult decisions regarding her care.  We strive to balance the aggressiveness of the care against the likelihood of a positive outcome all while keeping Brayleigh’s comfort and quality of life at the forefront.  We decided early on that we will give our child a chance and not allow anyone to deny her care simply because of her condition.  We strive to stay faithful and know that God’s will is what will prevail.  We consider each day with Brayleigh to be a blessing.
Despite all that she has been through, Brayleigh is such a happy baby. She smiles and coos often especially at the sight of a familiar face or sound of a familiar voice.  She is a constant reminder of God’s faithfulness and the power of prayer.  Her life is an inspiration.  So many people are closer to God and have a stronger prayer life by virtue of joining us in our prayers for Brayleigh.  Thanks so much to each and every one of you for kind words, deeds and actions during this new chapter of our lives.



  1. Hi my name is Kay i would just like to say congratulations on brayliegh but would love to talk to u an exchange info on trisomy my son was born in 2012 an past away from trisomy 13 not 18 but 13 it was the worst ever the doc were trying to find out were it came from an I had no family history of any trisomy or anything but I would to find away to contact u an talk if not God bless ur family an I pray braylieh continue to make great progress.

  2. I just saw the story of your beautiful baby and your beautiful family on Fox 5 Atlanta, and I had to reach out to you to say THANK YOU. Thank you for sharing your journey! Thank you for sharing Brayleigh and for pouring out your hearts in the story and your blog entries/updates. It was an extra special blessing to see your daughter thriving . . . sucking on her pacifier, looking so alertly at her dad, etc. I am grateful for each new day and each new ray of hope that God has bestowed upon you, grateful for the strength and courage that you have found in yourselves and each other to rise and face the future (the "God in you" that I saw and felt displayed on television). It touched me not only as one loving, caring human being to another but also as one parent of a sweet baby girl diagnosed with Trisomy 18 to another.

    Even though visiting the Trisomy 18 Foundation website and/or doing a little research certainly shows me how many other parents/families have faced the same or similar experience, for a long time I've felt alone or felt that there was no one (at least locally) that could literally relate to my joy and my pain—that is . . . until today. After seeing your story today, I don't feel alone. And, just in case you feel alone too or will ever feel that way in the future, I really wanted to reach out to you.

    I am so glad to see the love and support you have around you. I know you have the help and prayers of family, friends and health professionals, but please know that you can add me as one more person who is truly in your corner and would be more than happy to help with anything you may need. I realize you don't know me, but I live in Stone Mountain and would be more than happy to sit with the kids while you get some rest, lend a listening ear, offer a hug, run an errand, cook a meal, clean the house, wash clothes, etc. for you. All you have to do is ask.

    Please feel free to contact me anytime at I'm planning to donate and walk in the March of Dimes' March for Babies April 25th in support of baby Brayleigh, and I would love to meet you there. May God continue to bless you/your family and thanks so much again!


    Kisha Day

  3. Hello my name is Ebony and I am a proud mom of 4 beautiful children one of which was born with Trisomy 18. We didn't know what this was and were devastated to learn that our child would struggle before he was born. My husband and I knew that no matter what we couldn't lose hope. On July 19, 2008 Javuan Christopher was born and he spent the next 14 days in the neonatal ICU. He was in respiratory distress, much like Brayleigh, and he pulled through. It was touch and go but, we had faith in God and in the wonderful staff of the hospital. Now almost 7 years later he is thriving and excelling in school, making friends and is the most loving kid you could ever meet. Back then I didn't know anyone who had ever gone through this or even known what this was...we felt alone bc we didn't understand. So I started educating myself and found that even though Trisomy 18 is extremely rare there were others just like me! Never feel alone, we are out here! Brayleigh is beautiful! God bless you and your family!

    Ebony Rowe-Peavy

  4. Your daughter is beautiful! Our daughter was diagnosed w triplody and was stillborn in 2008, and it is so inspiring to see your baby also diagnosed as "incompatible with life" thriving. I hope more doctors see her amazing story and perhaps can give a glimmer of hope to other parents who have recieved similar diagnoses for their baby's. What a little miracle!

  5. We're sending lots of good wishes and prayers for Brayleigh and her whole loving family this weekend with a featured post on the Trisomy 18 Foundation's Facebook Page at Come visit to read all the well wishes.

  6. I just read the story of your loving daughter. It was heart touching. I am really happy that she won this life challenge. Happy birthday to her! One of my friend’s daughters has a hole in her heart. She is 15 year old and lives life to the fullest. You know her 15th birthday was celebrated at one of her favorite party city locations NY.