The best 93 days of my life (Warning ... very emotional!)

Baby Faith Hope ^ | May 23, 2009 | Myah

[NYer]

Faith at 4 days old

My name is Myah. I'm 23 years old and a single mom to a very special little girl.

When I was 19 weeks pregnant, I was told that my baby had no brain. This condition is known as "anencephaly." I was told that my baby was only alive because she was attached to me, but that she couldn't survive on her own. The doctor said that I could continue the pregnancy safely, but that my baby would die shortly after being born. Or I could choose to terminate the pregnancy then, which would mean being induced at 20 weeks and letting my baby die without ever seeing or holding her (I don't even want to know what they do with babies in this case). I guess to some people this would be a difficult decision, but it wasn't for me. I didn't have to think about it for a second. I knew there was nothing to gain by terminating the pregnancy and I already loved my daughter more than anyone else in the world. Even if she was unconscious like the doctors said and lived for only a few seconds or minutes --even if she was stillborn --it was worth it to me. And so we began our journey...

Today, as I type this, Faith is 10 weeks old (+ 1 day) and thriving! She is totally conscious and is as responsive as any "normal" baby. She is very sensitive to touch (especially when it's cold!) and can definitely hear. She smiles, cooes, cries, and is a feisty little girl. She knows what she likes and dislikes and she'll let you know it --she has her own little personality that we just can't get enough of. We have been shocked by her development... from day 1 she was smiling and saying baby words ("boo" "gee" "happen" "wali" ... too cute). She could lift her own head from birth and when she sat up on her own at 5 days old, we were quite amazed :)

Because Faith was clearly conscious and doing very well, a CAT scan was ordered to make sure her diagnosis was correct. A neuro-surgeon, radiologist, and neuro-radio-interventionologist reviewed the photos and all agreed that, amazingly, Faith does in fact have anencephaly. They have no explanation as to how Faith is even alive and breathing, let alone functioning on a conscious level! There are just some things doctors can't explain ;)

I hope that by sharing our story, we can shed some light on this condition known as anencephaly --but ultimately I hope that through Faith's life you will see the grace of God. Trust me... there is more hope and joy in store than you could ever imagine. I know that first-hand! You can read all the text books and medical journals you want, but this is REAL life. And this is real love. I love my daughter just as God made her :) She is a gift and a miracle... she always will be.

Myah

(Faith's mom)

On May 23rd, 2009, Faith passed into Heaven. She died of a gastro-intestinal bleed. She did not die of anencephaly, as predicted. She died of a stomach ulcer... something that may have been prevented if we had found our Pediatrician a little sooner. It breaks my heart to think that if we had done things differently, that Faith might not have suffered the way she did. But I have peace knowing that she is safe in Heaven now, living a beautiful pain-free life.

---

Biometrics/development (for anyone who is curous)

• Birth weight: 6 lbs, 9 ounces
• Current weight: 7 lbs, 6 ounces
• Length at birth: unknown
• Current length (to top of hat): 20 inches
• Reflexes present at birth: moro reflex, rooting reflex, walking/stepping reflex, sucking reflex, tonic neck reflex, palmar grasp reflex, plantar reflex, galant reflex, snout reflex.
• Reflexes present at 3 months: moro reflex (less), rooting reflex (less), walking/stepping reflex (only when she stretches out legs and "stands"), sucking reflex (stronger), tonic neck reflex, palmar grasp reflex, plantar reflex, galant reflex, snout reflex.
• Other abilities: can lift and support her own head, "stands" with help, smiles, pulls own arm out of sleeve when mommy takes off her sleeper.
• Responsive to: touch, sound, temperature, both internal and external stimuli (relaxes when cuddled or given a massage, cries when in pain or discomfort, startles to loud sounds, startles to cold touch, has a variety of facial expressions, is verbally communicative: cooing, grunting, crying, humming, sighing, etc.)
• Diagnosis: anencephaly (confirmed by CAT scan)
• Prognosis: unknown
• Medical interventions: sterile head dressing changed q 2 days, corticosteroid replacement (Prednisolone; attempting to ween to lowest dose possible), NG feeding tube (inserted at 25 days of age), other: Zantac, Tylenol PRN.
• Recent habits: Faith recently learned how to suck on a pacifier (her "souckie") and has been rooting for it day and night. She sometimes gets excited and moves her fists as she makes the sucking motions and flutters her eyelids.

[NYer]

Ping!

[sr4402]

Human life is precious!

[NYer]

Human life is precious!

From conception until natural death, be it 93 days or 93 years.

[FES0844]

God bless them both.

[llevrok]

As with any child, she’s to be loved and cherished. Whether it’s a day or many years, she’s a gift.

[NavyCanDo]

The story left this big guy with a lump in my throat.

Heaven surely rejoiced when this little darling came home.

[floridavoter2]

Somewhere in Hell, Dr Tiller is weeping that one got away...

[PGR88]

I am curious to know - how was Faith even able to make it into the world under Canada’s “single payer” system?

[TheClintons-STILLAnti-American]

Thanks for posting.

God bless that dear woman.♠

[beaversmom]

Very sad that another condition got her. I wonder how long she could have lived?

[Dave thA]

This unfortunate condition touched our family too.

Writing about the process can help the healing process as my step-daughter is finding out:

http://www.potatodiary.com/index.php?option=com_content&view=category&layout=blog&id=34&Itemid=18

God Bless all who have to face this.

[ak267]

Perhaps there was an “outer shell” of brain? What about a brain stem with additional material which over time could adapt and grow as the child ages???

I could swear I’ve read/head of a child (I think a teenager or adult now) that had something similar. His brain was like a Pacific “coral atoll”, a ring of brain with an open center. The person has a normal life and was doing well in school.

[Little Pig]

I recall a story from many years ago of a young man who struggled throughout grade and high school, but made it into college (barely). Once in college, he struggled more and more, and by his second year, finally through various meetings with professors and counsellors, he was sent to have some medical tests done to see if he had some form of brain problem (he had trouble with letter order sometimes, and had had increasing problems with memory). The tests showed that he had only a small lump of gray matter stuck to the inside of his forehead, with a thick nerve structure connecting it to a fully-formed brain stem. The rest of his skull was filled with fluid.

[longhorn too]

God bless this special mother. Faith has gone on to be with the other Saints who have gone before her. We don't always understand why God does things the way He chooses, but we do know Faith is in the presence of the Lord and has nothing but joy and happiness now.

[FarRightFanatic]

Oh my...thank you for posting this. What a precious child, a miracle really. My heart just breaks for this mother, losing her child after such a short time of having her here, but I am encouraged and simply in awe of their story.

[gigster]

A story like this can make a grown man cry.

[beaversmom]

Amazing what the body/brain can do in young people to adapt. I think there was a story too about a girl that had terrible seizures. They had to remove half her brain. She was basically normal after the operation if I’m recalling correctly.

[beaversmom]

Ping. I’m getting you back for the 99 balloons video.

[NYer]

Wow! They say we only use 20% of our brain. Perhaps in this young man’s case, he used up all he had. Odd that something like this wasn’t caught sooner.