Friday, August 14, 2009

Myelomeningocele

For those that are interested, here is a little background on the type of Spina Bifida that Annabelle has.

Myelomeningocele
is the most severe form of spina bifida. It occurs when the meninges push through the hole in the back, and the spinal cord also pushes though. Most babies who are born with this type of spina bifida also have hydrocephalus, an accumulation of fluid in and around the brain.

Because of the abnormal development of and damage to the spinal cord, a child with myelomeningocele typically has some paralysis. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening is on the back, the more severe the paralysis tends to be.

Below are some pictures of Annabelle's back pre and post surgery. I apologize if this is hard for some to see. Our reason for posting them are two fold:

1. When we got the Spina Bifida diagnosis while pregnant we found it very helpful to seek out pictures, stories, etc. about SB. Seeing actual pictures (not drawings) helped us to understand a bit better what we were in for. It helped to take the shock away a bit when she was born because we had seen other children's lesions (both big and small). We hope these pictures as well as our blog documentation of her progress will be able to help other families who find themselves in a similar situation. It's not pretty to look at, but it is a part of Annabelle and us.

2. To provide friends and family with a better understanding of what her back looks like. We unfortunately will not be allowing people to hold her until her back is healed as it is very delicate. We hope that the pictures will be able to express that better than we could verbally.

This is how Belle (as I call her) or Gracie (as Branden calls her) or Flower (as the boys call her) back looked on the day she was born.


Day # 2 (1 day after her surgery)


Day # 9


Day # 14 (Discharge day)


The middle triangular area is the area that is still open and needs to heal / close. Because her lesion was more than 50% of her back it was difficult for the neurosurgeon to find enough skin to actually close the back. He is very hopeful that with good wound care, minimal disruption to the area and no infection the back will eventually close. If he doesn't see significant progress he will eventually call in a wound care team and possibly a plastic surgeon.

Please feel free to ask us any questions about what you have read or saw in these pictures. We want Annabelle to be proud of who she is and we plan to never be shy or secretive about her condition. It is our goal to embrace the path that God has chosen for her and our family.
summersfamily09@gmail.com

11 comments:

Don N Beck said...

Precious people....you do not know me, but in reading your blog I am adding my prayers to the many I know you are recieving. I have had some exposure to hyperbaric treatment for wound healing. I do not know what the considerations might be with your daughter's shunt/ condition, but it might be worth inquiring. Many blessings to you!

Anonymous said...

Nicole and Brandon,
Thank you for sharing, I know you are going through a trying time, but you are doing with your heads high and with so much strength. I am thinking about you guys and sending prayers and extra energy and sleep. :-) You are doing a great job keeping everyone posted and informed. Your children are beautiful! Congrats on coming home! :-) Cindy Fojo

Howe Family said...

Thank you so much for sharing your story and pictures. you are truly brave and a great role model for Annabelle.

XOXO
Andrea

Haley Family said...

Nicole & Brandon,
What a precious and beautiful baby Annabelle is and so blessed to have been born into such a wonderful family. Thank you for sharing all your ups and downs - what amazing strength and great joy! Happy birthday to baby and daddy and congrats on having her home. I know it was hard for all of you you to be apart. Love and miss you. Hugs to your big boys!
Jan, Tim, Gianna & Celeste

The Beard Family of 5 said...

Every time I talk about your story to friends and family and try to answer the difficult question of "why?" I always say because you two are some of the most wonderful people in the world and you believe in God and God's plan. You were given Anna'belle' Grac'ie' Flower for a reason. The 5 of you will make this world a better place, in your own little way. xoxo

christine mcclain said...

Nicole, it was wonderful to see you today and to get to meet lil' Belle Gracie Flower. She is SOOO beautiful (and tiny, and obviously strong!) I have told you the same thing that Shannon wrote - you guys were chosen for Annabelle because of your love. I applaud you for sharing so much with friends and family - no doubt, it will reach others who need to hear your story. You are doing a wonderful job!!

xoxo - chris

5chamberlins said...

Thanks so much for sharing....our thoughts and hearts ditto many of the comments below.
We are praying for continued healing of Annabelle's wound and rest/strength for you and Branden - you are amazing and a complete inspiration!
XOXO

Brandy said...

Hi Nicole & Family!
Congartulations on your baby girl... I had assumed she must of been born by now so I checked your blog spot and it so great you can share and document everything here like this. Belle is adorable... looks a lot like you and Jack! She looks great... may I ask if she shows any signs of being paralyzed yet? (based on the info you provided here on her condition) I am so sad reading through everything and thinking about how hard this must be for you and Brandon - but at the same, very happy that she was born to such wonderful people, so accepting and strong, to care for her and give her the best life possible. Belle is blessed as are you to have her. Please, please do not hestitate to call or email me... I am right down the street and another week off before school/work starts back and can run to the store, take the boys to the park, whatever you need/like!! Even when I am back at work, I am home by 4 p.m. and am more than willing to help in any way while you heal from your c and bond with Belle. Jeff and I would love to bring you and the family dinner one evening - SuperMex, California Pizza Kitchen, whatever! You decide... pick a night and we will deliver to your door! ;) xox-Brandy Champlin

Tiffany Weese said...

Hi There... In reading your daughters story I wanted to share that I also have Myelomeningocele, even though sometimes the disease is very frustrating it definetly makes a person stronger!! I am now 25 years old and many surgeries later, working full time and going to school part time for nursing... So keep the positive attitude because not only will it benefit your daughter but also everyone involved.. :) god bless!

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Anonymous said...

Hi my name is Juliet and the reason I post a comment is because when I was 14 weeks pregnant the doctors tell me that my baby girl come with myelomeningocele and I don't know what to do now I am 24week pregnant and I have a appointment with the doctor again they going to do a second ultrasound I hope that my baby don't have nothing please can you email me with some information about this problem thanks and am so happy that your baby it's okey yulietzarva@yahoo.com