Genetic Disorder? Developmental Delay? I think not!

The moment my daughter was born, I fell in love with her. I am talking the head over heels, crazy in love, I want to hold you forever and never let you go love. She was/is perfect in every way and already so uniquely Sydney. No one could tell me otherwise and if they did I would go insane on them.

And then, the pediatrician covering for ours came in to her brand new baby screening and physical. Sydney was just under 2 hours old- I was loving on her, after 3 hours of pushing I was beyond exhausted, my mom sitting at my side, and Curtis had just stepped out to answer a phone call. In walk the pediatrician, takes my baby out of my arms without even introducing himself and walks over to the warming bed. He does his exam with a lot of muttering and sighing. Finally after several minutes he turns around with the most serious face on and introduces himself, hands me back my daughter, and tells us the “news”. (Now remember he didn’t even wait for Curtis to come back in or ask where her Daddy was…)

“Ma’am, I think your daughter has a developmental disorder and I think you need to get her to Wesley this weekend to have her tested.”

Perfect baby less than an hour old!

In those few moments it took him to tell me that, my heart stopped, I looked down at my daughter and felt many things flashing through my mind and heart… I couldn’t believe it, I just couldn’t and Curtis wasn’t even in the room.
During the following conversation, the pediatrician looked at either my mom or the ceiling never at me, and never once asked where Sydney’s Daddy was.
“I think she may have a genetic disorder… her face in asymmetrical, her ears are low set, her eyes only partially open and are an odd shape, her feet are looking like they are rocker bottom, she has the simian crease in her right hand, and she has a deep dimple above her buttocks.”
Here is what was running through my mind during and after he told us this “news”:
First of all, old man- stop touching my child, you just broke my heart into a million pieces and you are looking at MY mom instead of me and you didn’t have the common curtsey to wait for my husband to come back into the room.
Second, I was in labor for 13 hours, 3 of those of which I was pushing, and for those 3 hours of pushing my daughter was stuck for 2 hours and 57 minutes of it. We were literally 3 minutes away from having a c-section called and you think she has a genetic disorder because she is smooshed?
Third, if you would have presented this information in a better manner- mainly looked at me, the baby’s MOTHER, and waited for my husband to share this life changing news, I would be more receptive to what you are saying. I want the best for my baby and am willing to do the tests but your bedside manner sucks like none other.
Fourth, I despise you more than anything.
Fifth, looking down at my brand new, 2 hour old daughter, I fell more in love with her and knew without a doubt everything would be okay and she would be okay, that we would love her no matter what the real diagnosis was.

The next day dawned and we were still trying to digest the information given to us 24 hours before. A new day brought a new pediatrician into our room- not our pediatrician still but one from her practice. This one immediately was on my better side compared to the previous one. He walked into the room and greeted us, introduced himself, and asked if he could examine Sydney. He looked rather anxious and a little nervous, as if unsure with what he might be dealing with in this tiny baby girl. He talked to use through her whole exam, walking through step by step and letting us know what he was finding. He actually asked about my labor and her delivery- that’s a novel concept right there!- and took all that into account.

  • Her face was appearing asymmetrical because again she was STUCK for 3 hours in a very odd position and it would begin to even itself out. Her poor nose was all the way to the right side and her right eye was almost stuck shut and draining a ton of ooze, and her little mouth tilted to the right.
  • Her ears are “low set” because well it’s genetic- he asked to look at both our ears and had me pull my hair out-of-the-way, then decided mine were “low set” and she got them from me.
  • Her eyes were that way because again she was STUCK.
  • He told us that her “rocker bottom” feet weren’t true rocker bottom, he could tell she was stuck in an odd position for labor and maybe even the end part of her 3rd trimester.
  • He did take a very long look at both her palms, then both of ours, and declared her to have a pseudo simian crease on the right palm.
  • And that dimple, well is just a dimple for now.

He told us to follow-up with our own pediatrician either Monday or Tuesday and she would further decide if genetic testing was indeed necessary… We followed up that Tuesday, our pediatrician took a look at her and immediately said “You poor thing, I can tell you were stuck for a while.” She told us that no further testing was necessary, that everything was fine and we would watch her “asymmetrical face”, her pseudo  simian crease, and her feet over her first year. Oh, the relief and joy that we felt when she said that… She made us feel completely at ease and very sure of her decisions, she is what we needed and maybe, just maybe if she had been on call and seen her that 1st day of life we wouldn’t have been put through that pure torture and heartbreak.

Eight and a half months later and we have the most perfect, beautiful, and vivacious daughter 🙂

  • Her face is completely symmetrical it took her nose an almost complete 4 months to straighten itself on her face and now it is perfect.
  • Her eyes took a month to stop having the drainage due to the clogged tear ducts, within a week of birth they opened wide and big and have stayed that way ever since.
  • Her feet are doing just fine- we are still having some residual issues with the right hip- leading to right foot issues, all from the position in which she was stuck for those 3 hours of pushing.
  • That pseudo simian crease is still on her right palm and her pediatrician always takes a quick look at it during her appointments.
  • And that dimple, it has closed quite a lot but it is still there and I have a feeling it always will be 😉

My daughter is does not have a genetic disorder.

My daughter is not developmentally delayed like they said she would be because of all this. She is not developmentally delayed like I have been told by several people lately because she is 8 months old and not crawling. The girl has some intense determination and can almost pull herself all the way up, refused to lay down and will stand up with every given opportunity and will stay standing for as long as you let her. She can roll over just fine, she just refuses too. She can motor around just fine backwards on her stomach and around in a backwards circle. Her fine motor skills are developing at a very fast rate, she can pick up small things with the pincer grasp, and loves putting her eggs into a container and then taking them out.

She is not developmentally delayed. I have a feeling my daughter will walk before she crawls and it will be a run…

She is amazing, wonderful, beautiful, incredible, VERY smart, willing and wanting to learn, a little trouble maker who wants to and needs to get into everything, and above all she is my daughter.

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One response

  1. She is amazing, wonderful, beautiful, incredible, VERY smart, willing and wanting to learn, a little trouble maker who wants to and needs to get into everything, and above all she is my daughter. —— And my GREAT granddaughter…. She is perfect and as beautifus as her mother and grandmother was at that age……
    Cappy

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