Wednesday, September 28, 2011

Kayli's Neurologist reports on her Brain MRI. Original blog date Sept. 1, 2011

Kayli's Neurologist reports on her Brain MRI

by Kelly Essem Whistler on Thursday, September 1, 2011 at 5:20pm
Kayli's neuro called just now to discuss her recent brain MRI, taken 2 years after her 32 minute cardiac arrest.  Kayli now has a diagnosis of 'Diffused Brain Atrophy' secondary to a Hypoxic Event.  Simply put, Kayli's brain is is all there, only smaller.  Her brain is only apprx 1/4 the size of a "normal" brain her age.  Although Kayli's brain was completely intact, and fully functioning at birth and up to the cardiac arrest, the neuro stated it now compounds the primary diagnosis of T18. 
 Questions we asked:
1.What would you give as a prognosis, will Kayli's brain loss ultimately take her life? A: No, but Trisomy 18 has many complications and will likely be what takes her life. You can talk with a geneticist, I don't know enough about T18. (At this point, I "educated" the dr as to the spectrum of T18). :D
2. Will Kayli loose any more brain matter? A: No, her brain will not get worse nor better.  Her function can get better though.
3. Is there anything we can do to help Kayli's brain growth? A: We do not know a lot about that, but there are studies of brain growth clinical trials for Cerebral Palsy and Brain Atrophy in Germany and Georgia.  If you choose to consider experimental Clinical Trials, you can take her to Duke University in GA and talk to them about brain stem cell transplants. They might have support groups there or online for you.
4. Is there anything we can give her to enhance her brain growth/function, like DHA? A: Yes, DHA will help minimally and it is in her formula already.
5. We were told if her head circumference is larger, it means her brain is growing.  Is this true? A: Yes, her brain can grow, but it will not grow back.  She will always have only 25% of her brain. From what we understand, you can enhance the function of her remaining brain but she will never have a complete will always be diffused (smaller).
6. What do you think about Kayli's brain given her history of a 32 minute cardiac arrest.  A: I am impressed with her functioning level. I have never seen a child or person alive with such extensive brain loss.
7. Have you ever heard of anyone living after a half an hour cardiac arrest? A: NO, I didn't know that was possible. I am amazed that she is able to function at all.  You two have obviously taken great care to ensure her best care.  I have known of only 5 or 10 minute brain trauma being alive and functioning, and that long is rare. It is remarkable that she is not only alive, but functioning with such a long amount of time without oxygen. Very remarkable... I've never seen or heard about that length of time!
8. Kayli has 6 at home therapies and 3 rehab therapies to help her brain co-ordination and function. Is there anything else beyond therapies that we can do to help her progress further, easier, or faster? A: No, that is GREAT that she is in so many therapies.  That is why she is able to function! She is doing so well.
9. Would you be willing to keep Kayli as your patient even though she has T18 and an extensive history? Are you able to care for her, watch her med levels, adjust her meds, etc? A: Yes, definitely I will keep her as my patient! I will get her blood levels and we will make the adjustments over the phone so you don't have to bring her back in for that.
Hubby and I are sad about the loss our daughter has suffered, yet proud and amazed that our daughter is not only proving she IS compatible with life but is Loving life with T18 AND Kayli continues to challenge the neurologists by surviving and gaining functions after what is likely one of the longest Cardiac Arrests documented!
As far as Hubby and I, we will continue to advocate for Kayli, and follow her lead as we try to stay one step ahead of her and learn from her all at the same time.
May I remind you what I found in Kayli's brain MRI?...... a large heart shape! One of her ears is heart shaped, the other is in the shape of an upside down heart! Kayli is made of hearts! :D


  1. God Bless this little girl and her family, prayers and thoughts are out to you today and everyday :)

  2. Your whole family is a testament of God's love for us. I am so very touched by the strength you and your husband have. Yet, you're doing just as any loving parents should do, love and support one another and cheer each other to success. Kayli is such an inspiration. So beautiful is she! I love her long gorgeous hair and eyelashes. I'll keep your family in my prayers and wish the very best for you all. Blessings!