January 23, 2010

My daughter's medical issues

I don't want this blog to be entirely about my miraculous daughter (although believe me, she gives me enough material to do so!) However, I would be remiss if I didn't list her medical issues. I don't know who might be reading this, and for those of you who don't know me personally, you might want to know what we, and our daughter, A, have been dealing with for the last 3 1/2 years.

Keep in mind that I had a healthy pregnancy; nothing showed up on the ultrasound I had; and that I had a planned c-section at 38 weeks. I went in expecting a healthy baby girl, and was in for the shock of my life. She was born in June, 2006. She was in the NICU for almost 12 weeks, then home finally for 7 weeks, then back in the hospital for another 4 weeks while she got her tracheostomy. Amazingly, we have been out of the hospital (in-patient wise) ever since, except for a one day stay when we got her lip repaired.

A's list of medical issues:

1) bilateral cleft lip (repaired February 2007)

2) patent ductus arterious (heart defect) (repaired July 2006)

3) vascular ring (vessel wrapped around her esophagus and trachea) (repaired July 2006)

4) bilateral frontal lobe infarcts (she had a prenatal stroke; amazingly, there seems to be no visible effects from it!!!)

5) bilateral coloboma (gaps in her eyes, on her optic nerve; severely limits vision in her left eye and seems mild vision limits in her right eye)

6) bilateral hearing loss (profoundly deaf in her left ear, mild-to- moderately deaf in her right ear) (aided to normal hearing in her right ear with hearing aids)

7) cochleas in both ears missing a spiral

8) missing all semi-circular canals in both ears (you are supposed to have 3 in each, a total of 6; this affects balance)

9) just a thread of an auditory nerve in her left ear

10) right aortic arch (yes, her aorta arches to the right, not the left!)

11) paralyzed vocal chord

12) tracheomalacia (seems to have resolved)

13) very narrow airway

14) paraesophageal hernia

15) feeding issues at birth leading to placement of a g-tube (feeding tube) in August 2006 (removed July 2010)

16) breathing issues, including a stridor, since birth leading to the placement of a tracheostomy (breathing tube) in November 2006 (tracheostomy removed July 2010)

17) cleft in her upper right gum

18) extra upper tooth (!)

19) low muscle tone

20) acid reflux, leading to a fundoplication (surgery done July 2006 and re-done November 2006)


  1. I still cannot believe all of the issues she has. I just don't see her as having all of that. Other than her delays that you mention she is a healthy girl to me. And from what she has overcome, it is more than most kids could accomplish.

  2. She's a rock star, I just think that nothing will stop her from accomplishing what she sets her mind to. She's a very strong soul and she was blessed to be born to two equally strong parents.

  3. My daughter has a trach and gtube and recently i have come to blogging to express feelings and connect with others. It has been a year and a half now with both the trach and gtube and I am at that point where I feel as though there always going to be with us. I would love to learn more about your daughters journey to getting trach free as I hope that it is in my daughters near future.

  4. I found you through Steena today. Reading about your daughter was a bit like de ja vous. My son was born with a rare craniofacial birth anomoly, known as Apert's syndrome. NICU for 4 weeks, horrid acid refulx, bifrontal craniotomy/orbital advancement at 6 mos, 10 finger surgeries to create digits from 6 mos-18 mos and the CONSTANT trips for MRIs, optic nerve checks (wide space eyes/midline defects)and more appts and therapy than I care to recall. We made it through with an "it is what it is"attitude. At 25, my husband and I didn't know enough to be scared for the future, we just knew we would prove to everyone that their statistics were wrong. He would be a smart, funny, loving boy and grow into a productive member of society teaching people about tolerance along the way. He's 13, almost 14 now and my biggest supporter and cheerleader :) And guess what..we proved them wrong...We've got a straight A honor roll student who is one of the kindest creatures you will ever meet. As I'm sure you know, it was a very hard night 13 years ago, but the rewards have been sweeter than I ever imagined. Enjoy the ride, it's all too short!

  5. Oh my lovely lady...

    I just found you today from Yuliya (at She Suggests) because you're a triathlete. But the header about your miraculous daughter caught my eye, and I had to read.

    See, I'm also a speech pathologist and my *other* blog is a speech and language parent resource.

    I'm astounded by this list - and so humbled by the calm and determined way you seem to be about it (at least, your blogging voice seems to be such!).

    Very very glad I stumbled across you! Thanks all to Yuliya.

  6. Hello!

    I stumbled upon your blog quite randomly in my nightly perusal of special needs blogs. While I really don't know your daughter (or you), I thought it might be prudent to question whether you had ever heard of CHARGE syndrome? I know that you had mentioned in a post or two that you were seeking comfort in reading blogs of other parents who had kids like yours, so that prompted me to mention something. Many of your (fabulous) daughter's issues and characteristics are clinical characteristics of CHARGE syndrome (colobomas, hearing loss, absent semicircular canals and balance disorder, heart defects, pragmatic language difficulties ...), so I thought mentioning it might lead you to more blogs about kids even more like your own! I hope you don't take this in any negative light, and keep on doing the wonderful things you are already doing for A!



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