the timeline towards helmeting

[rachelsmommy78]

Back in september, my baby girl was diagnosed with torticollis.  basically, it means that she tilts her head to one side.  technically, it occurs "when a baby is positioned in the uterus so that her head is tilted to the side and her neck is down, the blood supply to the neck is cut off. This results in some tightness in one of the two strap (or sternocleidomastoid) muscles that connect the breastbone, head, and neck, and allow a baby to turn her neck." (babycenter.com) We had noticed that she always had her head tilted to one side, but being new parents, we thought all babies did that.  She started physical therapy and we thought we'd have this thing corrected in no time. 

Then it was noted in PT that she was a little delayed hitting certain developmental milestones because of the torticollis.  She had a hard time holding her head up when she lay on her belly for tummy time.  Tummy time is important for all children, but especially the child with torticollis.  In this position, they have to fight gravity to hold up their heads so it helps strengthen the neck muscles.  When other babies were learning to roll over, my girl was learning to hold her head up.  Then when she started to roll over (only to one side due to her neck constraints), the other babies were learn to sit up.  But as her torticollis improved, she started to catch up.  She learned to sit up on her own.  Then she was rolling from both her left and right sides.  Then she learned how to crawl. 

She is a tough baby.... I've seen her struggle through this condition, but she overcomes each obstacle that is placed before her.  She is stubborn and determined yet so sweet.  I think the fact that she is such a happy little girl has also helped her.  She is amazing!

Well, her newest obstacle is not about hitting a developmental milestone.... it is another diagnosis.  Rachel was diagnosed with Plagiocephaly back in December.  We took her to a specialist at the Children's Hospital in January, who confirmed that she does in fact have it and that she may need a helmet to correct this problem as well.  Plagiocephaly is also known as flat head syndrome.  It is "when a baby's head develops a flat spot or becomes asymmetrical due to some kind of external pressure." (babycenter.com)  Since my little girl couldn't turn her head because of her torticollis, she developed a flat spot.  She also has some facial asymmetry because of the plagiocephaly.  The doctors said that her case is minor for both the plagiocephaly and the facial asymmetry and that it was my husband and I, who would have to make the decision to helmet her or to go without it. 

It took us a couple of days, but we decided to helmet.  Another momma here on cafemom, put it best when she asked me how would i feel when my daughter was a teenager and asked me why i didn't correct this problem for her.  i would feel terrible knowing that i could've done something for her, but didn't.  I was afraid of people staring at her in public or rude comments from others about her helmet.  I didn't like the face that she would have to wear this helmet 23 hours a day for months.  I won't get to kiss her forehead or rub her head for months.

I still am afraid of the stares and comments.  I will miss her as she is right now without her helmet.  I know there will be tears shed..... but that's just it..... they are all mine.  I will notice other's reactions to her helmet, but she won't.  I will miss her as a "normal" unhelmeted child, but she won't know that what she is going through is the exception, not the rule.  I will cry at this change, but she will remain my sweet, happy rachel.  The hesitation was mine, not hers.... but the outcome will be all for her. 

I am helmeting her BECAUSE I love her. 

[SchoolPsychMom]

Feb. 5, 2009 at 9:38 PM

Just read your timeline, it could basically be my sons!! Except we noticed both the torticollis and plagiocephaly by three weeks of age! Three weeks and so much damage was done!! And I think he was a little more developmentally delayed, didn't roll over until 5.5 months and crawl until 9 months. We are currently working on pulling to stand  at the age of 10 months and he is doing well. We have moved to a "service coordination" model with early intervention PT which means his therapist checks in 1x/month and visits him every 3 months. We'll see how he does over the next few months. 

Try not to think about the 'stares' in public. Believe it or not, most people comment on my son's bright blue eyes and long lashes. Kids may ask questions or stare, but they're kids, you can't blame them.  Recently a little boys said "Look mom, like the blue Power Ranger!" (My son's helmet is swirly blue and white) It was hysterical.  I get a few questions, some from parents in the same boat. You will miss kissing her head and face without a doubt, but it's only a few months.

When I get bummed about our situation I remind myself that there are so many babies with much more serious conditions, and I am thankful this is the worst (so far) we've had to deal with.  This too shall pass...