I mentioned here that I would write more on Baby G and 49, XXXXY syndrome, and now that I have a minute to myself, I can finally delve in a little deeper.
So, as I explained, Baby G has three extra X chromosomes. Essentially, according to the information I have here, it can lead to a variety of issues, but here are some of the characteristics that I’ve observed so far in Baby G:
- Low birth weight, he was 5lb 2oz
- low muscle tone, causing floppiness, not a lot, but some low tone
- unusual features of the hands and feet, club foot, overriding toes and small hands and feet. Baby G has an overriding toe on his right foot…I am told that his great grandmother had that as well…?
- alpha fetal protein screen was high, while the ultrasound looked normal
- pinky finger curves inwards…so does mine, actually.
- moving to solid foods delayed…Baby G took his sweet time getting the hang of solids, only finally picking it up at 7 1/2 months. However, it was also at this time he was prescribed glasses for farsightedness, and could then actually see what I was shoving in his mouth, so…?
- verbal skills delayed…Baby G doesn’t babble as much as as B did, and he did not cry at birth. He will let us know when there’s something wrong, hungry, tired, etc. but in between not a whole lot. He’s always been extremely alert, alluding to the strong visual skills characteristic. He’s extremely observant, especially when it comes to his big sister. Again, knowing now that he’s far sighted and has wee baby glasses to help him see things close up, I’ve noticed a marked difference in babbling, movement and eating. He also started sitting up on his own at that time, so any delays I thought might have been delays, may not have been.
- Speech is most likely to be affected, signing used to communicate. This one I am anticipating, as I said he doesn’t babble as much as I would hope, and his giggles aren’t really full-on baby giggles either; they sound more like “cough-laughs”. But we used basic “please” and “thank you” signs with B, as well as “all done”, so sign language will be in full swing in the coming months I think.
- Delays in sitting, crawling, rolling, walking…sitting up took him awhile. Even now when he sits, most of the time his legs are straight out in front of him. He doesn’t do a lot of leaning forward yet either. Tummy time was difficult at first, but is now not really an issue. His once stiff straight legs are now loosening and learning to bend freely without help. He’s rolling over to reach toys now and can grab different objects with different textures. I anticipate crawling within the next two weeks.
It’s interesting to read the research I have on 49,XXXXY, and to see how each family has been affected. Some boys have severe respiratory infections, most beginning in the second half of the first year and persisting through mid-childhood. Some boys have minor heart issues, some only speech and behavioral difficulties.
I’m nervous, and a little excited to see exactly where Baby G will fall in among his peers. The research I’m referencing here actually comes from a nurse who had been told that a baby had been born with the same condition as her son. And there she was with real websites, information and her home phone number if we had any questions. I’ll forever be grateful to her, and to the universe for connecting us so fatefully.
Here are is a link to the Unique website that she provided me, for anyone out there who might be interested:
Rare Chromosome Disorder Support Group
I’ll post more links and updates on his progress in the coming weeks😊