This morning, I am writing this from the seventh floor of the Marriott in Orlando, in the quiet of my room; however, this weekend has been anything but quiet. The theme surrounding this years National Down Syndrome Congress Conference was “Dreams do come true…”. At each and every turn we were all witnesses to this theme. Families from all over the country and some from other countries, came together for this beautiful weekend to share dreams accomplished, dreams for the future, and discovering even new dreams.
I was blessed to be able to attend the 51st NDSC Conference along with my daughter, Henley. Henley is 15; she has a pure and genuine heart and she loves her brother immensely. Having her as my sidekick for this has been such a delight. I can’t wait to see what opportunities like this do to shape her future, for many of the doctors and researchers here have been molded by their own experiences with having siblings with Down syndrome. These beautiful souls with an extra chromosome really shape the lives of their entire families. I, also, must mention the friendships she’s made over this four days. Lifelong friends with a commonality of our journey makes the tightest bonds.
The toughest part of a weekend like this is choosing what sessions to join. Each child is a unique individual and a one size fits all class could never exist. So I always read the descriptions of the class and who is presenting to make my best informed decisions. What will help Hudson? What will help families I know? What will help me most? What will help Hudson’s therapists? The real answer is that all information is needed.
Because of Hudson’s Law, a Down syndrome information law in Mississippi, I decided to attend the new updated guidelines for children and adolescents with Down syndrome published by the American Academy of Pediatrics. This session was designed to go over the guidelines of what should be checked by pediatricians. Here is a link to the American Academy of Pediatrics: Health Supervision for Children and Adolescents With Down Syndrome:
AAP Updates Recommendations for Care of Children with Down Syndrome
I remember exactly the moment this publication was shared with me in 2022… there was a celebration that took place at my house. FINALLY, it was being told for the doctors to CONGRATULATE the family receiving the diagnosis. Seriously, this was just added in 2022. Below is what was the updated guidelines for bedside diagnosis:
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At diagnosis, immediate advice remains pertinent regarding the need to: |
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• first, congratulate the family |
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• have infant present; refer to infant by name |
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• use a respectful bedside manner |
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• time discussion after labor is complete and as soon as diagnosis is suspected (not necessarily confirmed) |
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• have a support person present for mother, father, and family members as appropriate |
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• use a cohesive, physician-led team approach |
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Helpful discussion will include: |
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• up-to-date, accurate information |
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• a balanced approach rather than relying on personal opinions and experience |
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• person-first language (ie, child with Down syndrome)32 ; |
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• connection to other parents and resource groups |
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• discussion of life potentials for people with Down syndrome |
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Share with families the interplay within families and individual perspectives: |
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• individuals with Down syndrome: nearly 99% indicated that they were happy with their lives, and 97% liked who they are and encouraged health care professionals to value them, emphasizing that they share similar hopes and dreams as people without Down syndrome33 ; |
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• parents: 79% felt their outlook on life was more positive because of people with Down syndrome31 ; |
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• siblings: 88% felt that they were better people because of their siblings with Down syndrome33 ; |
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• a majority of families report unanimous feelings of love and pride |
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• positive themes dominate modern families34 |
Everything listed is exactly why “Hudson’s Law” was so easy to pass in Mississippi. Providing information with a person-first approach is a game changer for families. And the truth about Down syndrome is way more positive than what you’ll find when you research on your own. Moving this approach to a recommended guideline is everything.
So being in the room when these word were spoken aloud to hear doctors sharing this news to the audience was a real moment of goosebumps and tears. Dreams do come true.
And just as I thought they could not top this topic, my mind was blown with new information that I had no clue about….
Even thinking about it now, my heart is racing and my hands are shaking. This news was specifically about Hudson. Let me start by saying that Hudson was born with Transient Leukemia. This diagnosis affects 4-10% of children born with Down syndrome. Hudson had blast cells found at day one of life and was immediately provided a team of HemOnc specialists. Hudson, the strongest person I know, fought his leukemia with no medication and in 4 weeks time… the blast cells were gone. This was 5 years ago. At this time, the information provided stated that his leukemia has the biggest chance to return between the ages of 4-10. Hudson is 5. Looking forward to birthdays always had background noise; the wonderful to celebrate him, the worry of what we couldn’t see, but knew could be looming. For those of you reading this, the slide that came up stated this: -Increased risk of AML in the 1st 4 years of life (up to 30%). I thought I was going to scream! I left the room, ran to the bathroom and cried and cried. I put myself back together and went back in. Dr. Brian Skotko, one of the doctors on this panel and a real leader for research and new tools created, was sitting just in front of me. I asked him if we could talk after the meeting, that I had so many questions. He smile and said, “of course”. Pretty sure my feet were tapping 200 times per minute and no telling what my heart rate was? I remember telling myself to calm down, this could be about something else, Hudson may not apply to this. I was setting myself up to be real… but I was right!!! Hudson is through this part of his journey… Praise The Lord! Now we can get back to celebrating birthdays with no clouds and we can remove one blood draw off of our list. These are both extremely exciting for us. I dreamed of this day, I just thought it was years away. Dreams do come true.
This conference was filled with so much information and so much love for this journey. I attended classes about dual diagnosis of Down syndrome and Autism. I attended a class about eyes and new developments. I sat in classes about speech, feeding, Down syndrome regression, Alzheimer’s, OT desensitization, advocacy bootcamp, potty training, aquatic exercise, and more. A very busy few days. I will write about more of some of these in the coming months. One this is clear, the research being done and the hope for the future in where it leads us, again proves that even unknown dreams will come true.
You really want to know why you should be supporting your local Buddy Walk(s) and local organizations who support people living with Down syndrome? Knowledge is power for our loved ones, celebrating with them is everything and helping them achieve their dream(s) is one of the most important pieces. You can help. You are the difference.
My family was given a $600 scholarship from Gulf Coast Down Syndrome Society. It was such a wonderful help. From fighting for needed change in D.C., to conferences like this, we will have spent over $10,000 this year alone. This fight is one we are dedicated to. This information is a must to learn. Even the updates, like the transient leukemia, are so important. It is hope. It is information we have to know to share in our communities and with our own doctors.
