Tuesday, September 18, 2012

Developmental Delays Debacle

Truth: Emma has developmental delays.

This past week has been extremely emotional.  Emma had three big appointments this week including: Neurology, Cardiology, and Orthopedics.  Our week started off with a BANG….and not in a good way.   We saw a neurologist this week for a yearly evaluation.  It was just Emma and I at the appointment.  The appointment was brutal in so many ways.  I have debated on whether or not to even put this appointment’s details on the blog; however, I WILL NOT EVER TOLERATE any medical professional degrading my child.  Anyways I digress….

The Neurologist (who shall remain nameless) had some very harsh things to say about my precious little girl.  Scott and I are very much aware that Emma has developmental delays.  What we do not know is if the delays are a product of enduring a prolonged hospital stay (being EXTREMELY SICK FYI), from neurological issues, or perhaps a combination of both.  If you have followed this blog from the beginning, then you might remember that via a head ultrasound on day 1, the doctors believe that Emma is missing her corpus callosum.  Due to Emma’s medically fragile state, she has never had an MRI.  This is shocking to a lot of people as it is common when children have “coded” or have brain abnormalities.  Emma has, BIG THANK YOU TO OUR WONDERFUL GOD, not had seizures or a stroke.  Emma has progressed although slowly compared to the norm.  We measure Emma’s developmental milestones by Emma.  I have always told our therapists to please not tell me “Emma’s” developmental age according to their charts.  I do not think that it is fair to be compared to “normal” children who had the privilege to develop in a normal environment and manner. 

At this appointment the neurologist said:

            You need to consider “quantity” over “quality”
            These kids normally do not live to be teenagers anyway
            She will probably never walk
            We should treat “these” kids like we do 80-year-old elderly people with no                         quality of life.
If she has to be considered for transplant I do not know if I would recommend that due to her quality of life.

I could add more, but I think you get the gist.  I refused to shed a tear in front of that heartless doctor.  I am giving this person the benefit of a doubt that they are simply ignorant.  This “professional” probably thought that they were giving me such life-altering information that would change my opinion of Emma’s future care--------FAT CHANCE of that happening.  This fueled my fire and passion for ensuring that Emma would always be given a chance.  I refuse to let negativity about her future be spoken in her presence.  We have spoken to some key people to educate them on this terrible appointment and have some more people to talk to.  What scares me the most is that this individual can help decide who is worth living and who is not.   

We also saw the cardiologist and orthopedic doctors this week.  Emma had the whole work up at the cardiologist: ECHO, EKG, Lab work, and went home with a 24 holter monitor.  Overall things looked good.  Emma was not in the best mood and did not want to fully cooperate with all of the tests----strong-willed much J 
Her echo showed trivially worsened function, so we started Emma on a small dose of a heart med.  Our cardiologist was not too concerned because Emma has done this before and clinically she looks great.

Emma is now being seen a Scottish Rite for her scoliosis.   This appointment was very quick.  We pretty much confirmed what we already knew.  Emma has a mild version of scoliosis.  She does not need any intervention at this moment.  We will take her to Scottish Rite every 6 months for follow-up x-rays.

As you can see, Emma has been a very busy little girl.  On top of all the appointments, Emma has continued her home therapies.  Her therapists are happy with Emma’s progress.  She likes to keep her therapists on their toes.  Emma likes to do what we want her to do in therapy after her therapists leave.  Emma is trying so hard to communicate with us.  We have been working very hard with her to learn more signs, show us pictures, and point to what she is wanting.  She continues to eat well and will eat pretty much any pureed food we give her. 

Did I mention strong-willed----well the other day Emma was not getting her way and threw a little fit.  When she did she threw herself back and bonked her little head on the floor (carpeted).  This has scared her, so now she will only sit by herself if we are right next to her, or if she can feel a pillow behind her.   I think this is also a way for her to ensure that we are paying attention to her all the time. 

Emma has got to do a lot of fun things lately.  I will share those with you soon in another post.  This mom is tired and if history repeats itself my sweet little girl will be up at the crack of dawn ready to play.

Thank you again for all of your prayers. 

Prayer Requests:

Please Pray that Emma will continue to progress in her development to prove the naysayers wrong.

Pray that Emma’s scoliosis remains mild.

Please pray that Emma’s heart function returns to normal.

As viral season approaches, please pray that Emma can stay infection/virus free.

****Please pray for our buddies in the HEARTLAND.  This week has been difficult for many families.

As always, God is Good!  All the Time!  God is Good!


For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made. Psalm 139:13-14.

Note a wrote right after the appointment to vent a little:

Dr. Ignorant Dr. (not cardiologist),

My child HAS a quality of life. No, she is not walking; however, she is starting to put more weight in her legs. Please take into consideration that she spent a year out of her first 15 months hospitalized and for the majority intubated and VERY sick. That does have an impact on their developmental levels.

Yes, I understand that she has had lower than normal oxygen levels since birth (she is a single ventricle). Yes, I understand that this can cause brain issues and might be causing some muscle issues. However, this DOES NOT in any way constitute you telling me that maybe I need to consider "quantity vs quality" and maybe the doctors in the pediatric profession should consider treating "these" children like elderly who really have no quality of life...UGH...

Also, I am aware that she "may" not graduate high school. That does not mean that I am not going to do my best to prepare her for however long we are blessed with her.

Please do not diagnose my child with conditions that can only be diagnosed with an MRI that she HAS NOT HAD.

DO NOT put limits on my child. There are children who walk AFTER 2. WE do not LIMIT my child therefore you do not have the right to do so. My child may not fit into your definition of normal, but I could care less. She is perfect to my husband and I.


P.S. Yes, we are looking for another specialist in this field.


  1. Wow! So glad you are looking for someone else! Emma deserves to people that believe in her. I have never met Emma but can tell from the pictures you two post that she has an excellent quality of life with two of the most loving parents.

    Jenny H.

  2. I'm even offended that this man thinks elderly deserve different treatment!!! Everyone should be given the same level of care. And I especially cannot believe that he was uneducated enough to treat you and your precious girl that way!!! What a shame to the medical community.

  3. Oh. My. Word. How dare he! That infuriated me. God bless you for taking up for your little girl and knowing that Dr. MOM is always best.

  4. I hear you Sarah. Raygen is 18months (HLHS) and is still not walking, talking or crawling. Her blood clots have affected her upper body so she isn't strong enough to support herself to crawl,but she gets around in her own way. She is also starting to more weight on her legs too. I'm proud of you for defending your daughter the way you did, I would do the same thing.

  5. As long as any human has breath, we are to fight for them. period. Quantity...Quality...Race...Religion...etc.
    God gave us our first breath and He will choose when our last one is. Between those two times, he has given doctors the wisdom to help those who need it until HE says it's over. We would not be human if we thought it was our business to decide who is a little more deserving of care than another. As long as there is breath... you fight for your Emma. God's grace is sufficient.

  6. As I type this my hands are shaking.... What is wrong with this so called doctor? He is NOT GOD! Maybe he needs to be reminded of that!
    When my niece was born she had a level 3 right side brain bleed. She was diagnosed with sever cerebral palsy. Kayla spent a lot of her life living with me when she was younger and I have to say she is a fighter and one amazing kid! Today Kayla is 17 years old. She does not walk (she has the coolest hot pink wheel chair), she does not talk (although she is capable). What she does do is get up everyday and go to her JOB! She has friends, and had a wonderful time in main stream school.

    Oh, this post just makes me angry!! Can I repost this please?

  7. Well, what a heart felt note. This doctor's attitude was absolutely unbelievable. This precious baby will thrive and continue to gain in all areas. You and Scott have a wonderful outlook and you are the reason she has done as well as she has so far. By all means, get another doctor. You don't have to deal with that kind of attitude. After reading your blog and reading the "note" you wrote right after the doctors visit..I scrolled down and saw that precious little girl with those beautiful eyes and beautiful smile. How dare a doctor be so cruel. Being strong-willed will get Emma through a lot of things. I had a friend that had a child one time that threw a horrible fit and lunged backward on purpose and bumped his head. After that, if he threw a fit, he looked behind him. If it was a hard floor, he laid down very easily, then threw the fit. They are so funny!!! God bless you and your precious gift from God. You know, none of us have the promise of tomorrow. The Lord could come today and take us all. We had better be ready. Love and prayers to all of you.

  8. I hate it when I hear heartbreaking stories of "professionals" who may be technically smart but who have no heart or feelings about the impact their words can have. You know your child better than anyone outside the family--they measure quality based on some measurement someone came up with, somewhere. Is this person actually a pediatric neurologist? Unbelievable, if so. How cruel and thoughtless. He probably didn't mean for it to be cruel, but they need to stop and think about the impact of their words. I had a doctor once tell me something very scary about my newborn,and when I burst into tears, he said "Oh, gee, I wouldn't have said anything if I had known it would have upset you!" (And he was wrong, anyway!) These people are working for you, and he will know that when your next doctor call for the records. Keep on fighting for your little one!

  9. I do not know you personally but I grew up in Henryetta and went to church with Clyde and Carolyn. I am a special ed teacher and believe no parent should be treated the way Dr. Ignorant treated you. My motto is never say never. I start working with the child on his/her level and go up from there. I've been praying for your sweet Emma and wish you guys the best.
    I Just couldn't set back and not say anything after seeing the way that doctor treated you. Keep fighting for Emma!!

  10. From a mother who had a "developmentaly delayed" child (but nothing even remotely as bad as little Emma) I say Give 'em heck, Sarah!!! God knew Emma needed a strong mom like you!

  11. I am appalled at the doctor and his so-called "recommendations or opinions" to you. I have followed your blog since the beginning and have prayed for your precious Emma! You are right to seek another opinion, as a momma of 4 I would do the same thing! Follow your gut and never stop fighting for your kiddos! I will add some extra prayers in there for you all! God Bless You!
    Leslie Gilmore

  12. I just want to say what a wonderful mother you are! I believe every child is different and they do things their own way and in their own time! Emma is very special and she has proven more than once that she is a fighter!! God is Good! Sending love your way!

  13. I've tried a couple of time to post a comment but it has never shown up! Just wanted to say good for you for being Emma's advocate and loving mommy, and not allowing a thoughtless doctor to predict your little one's future. Hope you are able to find a doctor who can actually help instead of saying hurtful things.

  14. So sorry for the experience....I can't even imagine! Praying for Emma and her progress and healing. Praying for you as you find just the right dr for her. Praying for strength for each day