Saturday, March 21, 2009

Ethan

Ethan with the most loving mother any child could hope to have......Krista!


I have shared with you many times about my triplet grandsons. Hayden, Ethan and Jaxon. They are so amazing! And I have enjoyed comments and emails from many of you sharing your own joy with multiples in your families.

I have not shared with you about our Ethan. Ethan has Spina Bifida~Myelomeningocele.

Spina bifida is the most common of a group of birth defects call neural tube defects. (NTDs). The neural tube is the embryonic structure that develops into the brain and spinal cord. Often called open spine, spina bifida affects the backbone and, sometimes the spinal cord. It is one of the most common severe birth defects in the United States, affecting about 1,300 babies each year.

In the embryo, there is a tiny ribbon of tissue that folds inward to form a tube. This structure, called the neural tube, forms by the 28th day after conception. When this process goes awry and the neural tube does not close completely, defects in the spinal cord and in the vertebrae (small bones of the spine) can result.
There are three forms of spina bifida:
  • Occulta. In this mildest form, there are usually no symptoms. Affected individuals have a small defect or gap in one or more of the vertebrae of the spine. A few have a dimple, hairy patch, dark spot or selling over the affected area. The spinal cord and nerves usually are normal, and most affected individuals need no treatment.
  • Meningocele. In this rarest form, a cyst or fluid-filled sac pokes through the open part of the spine. The sac contains the membranes that protect the spinal cord, but not the spinal nerves. The cyst is removed by surgery, usually allowing for normal development.
  • Myelomeningocele. In this most severe form, the cyst holds both the membranes and nerve roots of the spinal cord and, often, the cord itself. Or there may be no cyst, but only a fully exposed section of the spinal cord and nerves. Affected babies are at high risk of infection until the back is closed surgically, although antibiotic treatment may offer temporary protection. Inspite of surgery, affected babies have some degree of leg paralysis and bladder and bowel control problems. In general, the higher the cyst on the back, the more severe the paralysis.

Ethan was in a sack to keep the affected area moist until his surgery. Ethan's cyst was low on his back making the best of a worst case scenario.

A baby with myelomeningocele usually requires surgery within 24 to 48 hours after birth. Doctors surgically tuck exposed nerves and spinal cord back inside the spinal canal and cover them with muscle and skin. Prompt surgery helps prevent additional nerve damage. However, nerve damage that already has occurred cannot be reversed. As soon after surgery as possible, a physical therapist teaches parents how to exercise their baby's legs and feet to prepare for walking with leg braces and crutches.
Ethan resting comfortably after surgery, he is one day old.

Ethan came home with exercises prescribed by his physical therapist. He did them 3 times daily and some were done with the exercise ball.

  • Hydrocephalus. About 70 to 90 percent of children with myelomeningocele develop hydrocephalus. When cerebrospinal fluid, which cushions and protects the brain and spinal cord, is unable to circulate normally, fluid collects in and around the brain, causing the head to be enlarged. Without treatment, hydrocephalus can result in brain damage and mental retardation. Doctors usually treat hydrocephalus by surgically inserting a tube called a shunt that drains the excess fluid. The shunt runs under the skin into the chest or abdomen, and the fluid passes harmlessly into the child's body. With treatment, children with spina bifida usually can become active individuals. Most live normal or near-normal life spans.
  • Prevention: A B-vitamin called Folic acid can help prevent spina bifida and other NTD's. The key is having enough folic acid in the system before pregnancy and during the early weeks of pregnancy, before the nerual tube closes.

  • My information shared is from the March of Dimes website: http://www.marchofdimes.com/

    When Ethan came home from the hospital, at the same time as his brothers, he was in leg casts. He had club feet, which is common with spina bifida, and in this case a part of the condition. After 6 weeks the casts were removed to let muscle development happen and let the legs grow and straighten. Treatment would take place surgically at a later date.
    In late September Ethan was experiencing hydrocephalus to a degree that it became necessary for a shunt to be inserted. This gave Ethan immediate relief from the pressure.
    I love this picture, babies have a mind of there own and Ethan does too. You can see his shunt just under the scalp.
    Ethan is so amazing, he is a people person. He prefers people to objects and from his earliest days this really showed. Even before the shunt was in place and it was difficult for him to look up from the pressure. Right before the Christening in October, Ethan had his shunt installed. Less than a week later you can see him look easily at his God-mother. God has blessed us with Ethan and Ethan is blessed with many loving and caring people in his life. It is a very emotional to have a child born with a birth defect. From the moment you know your life is changed. You are dealing with something completely out of your control. It is events like these that really challenge your faith into action. Looking back you know what a blessing it is. Our strength comes from God, He provides the strength and courage to face all challenges. And brings wonderful people along side you for support.
Ethan is the biggest of the triplets, he is getting stronger and sits up with help. A big smiler, such a gift to make you laugh and smile with him. His feet are still turned down and in, and soon will need the heel cords loosened. It is time to try some cereal, we are six months old:



WHOA! What did you put in my mouth....... I am not impressed.... lol.... Krista says he is enjoying it much better now but is so glad she got this picture. He did this for about a week.
Time goes by so fast and with three babies without pictures you forget the little things. Which are the big things really.
Ethan is developing normally along with his brothers, I think right now is really the easiest time for his condition. The boys are to young to know there are differences and challenges to over come, together.

Yes, how wonderful for Ethan to have these two characters for support. Watching the closeness of the boys is really a wonderful thing.

In February Ethan went in for a procedure to repair a small hernia. He is resting comfortably with his little friend. Krista said the nurses all loved coming in and being with him. He really draws people to him. Do you know someone like that, I find it one of the most endearing qualities. People with this gift are a gift to everyone they know.
The picture of a spoke in the wheel, it is strongest when all are present. This last week Ethan had his surgery to lengthen and loosen his heel cord. He is home resting comfortably with his green casts. In a month he will go in for new casts and more adjustments to feet. This should be his last surgery unless his shunt fails.
Ethan doesn't have feeling below the knees so he will walk with the help of braces. Time will tell if the braces are at his thighs or hip. The strength in his legs will be the deciding factor. At any rate Ethan has God, parents and a large loving family to give him all the support he will need. I am so blessed to call him my grandson and I look forward to every step he takes in his life......
Actually, I am looking forward to every step the three take, together!
Fondly,
Carrie

13 comments:

Anne said...

Thanks for all the info on Spina bifida. I had heard of it but didn't really know much about it. Ethan is lucky to have such a strong group around him for support. And he'll always have his bros to watch out for him too. Thanks Carrie for such a touching story.

Kaaren said...

Thanks for sharing Carrie.

Ethan is a special gift, given with a special purpose, probably undetermined as yet.

I feel privileged to be able to have "met" him.

God bless Ethan, you and his family and friends.

Judy S. said...

Thanks for sharing, Carrie. What darling boys who are so lucky to have such a wonderful, loving family. Blessings to all of you.

Carol said...

Carrie thank you so very much for sharing the wonderfully touching story of your sweet Ethan. He's such a strong little man...what a blessing he is. Truly a special little boy, in a very special family.

Kindra said...

I wish I could give Ethan and his brothers a big hug and kiss. What a tough thing to go through for everyone. Those boys are such a blessing and I know everything will turn out fine for sweet Ethan!

Taran was born with pectus excavatum. You can google if you want. We were devasted when we found out when he was officially diagnosed at 6 months. We hope it will only be cosmetic...but when puberty hits and his bones start to grow then we will have to watch his sternum and how he is feeling. It could affect his heart and lungs and then he will have to have surgery. Which they say is one of the most painful surgeries out there. We try not to think about that and just rejoice and thank God everyday that he brought Taran and Kellon into our lives. :)

Quilts And Pieces said...

I was so glad to read about this. My friend just had a grandchild born with this (and from your desciriptions I'm guessing the same kind as Ethan). And guess what! His name is Ethan too! He finally came home! A very happy day after a month in the hospital!

karen said...

I just read your recent post about your precious Ethan. I wanted to let you know that I have a son, now 21 years old, who also was born with Spina Bifida. He too has had many surgeries, and has been through a lot, but he has persevered. He is now a junior in college and I am very proud of the man he has become. If you would like, I could share some of our experiences. Please email me at kajquilts@yahoo.com if you want.

Candace said...

Ethan is truly a blessing, Carrie - thank you for sharing him with us. Years ago I employed a young woman in her 20's with Spina Bifida. The work was hard for her, but it was also the bright spot in her day and made her feel so important - her name was Carrie!
Cheers!

Red Geranium Cottage said...

Thanks for sharing all the info Carrie. Ethan is a very lucky boy to have all of you to help him along the way. Best of luck to the whole family.

Brenda said...

Oh, how I'm loving those munchkins! I'll be saying a little prayer for Ethan's speedy recovery.
Walking will be much easier with a brother at each side...maybe that's why they came all at once, to share the weight and give each other strength. We're not going to last forever and it much be some comfort to know he will have his brothers to help him along, should he need it.
Thanks for sharing this info. I was so misinformed. I thought all cases just had the little pouch tucked in and moved on. I didn't know there were other kinds. What heartbreak to have to put your baby through surgery. UGH! I can't even go there; I'm such a weenie! They'd have to sedate me. I used to cry when I took GP for routine blood tests! LOL!

Lindsey said...

Thanks for sharing, Carrie. It looks like he's got a lot of love and that can be half the battle sometimes. He couldn't be in a better place than with your sweet family.

KCQuilter said...

Thank you for sharing Ethan with us. What an amazing little guy. And those two brothers are pretty special too!

Kim said...

Oh, my goodness. A challenge at every turn, but the challenge met and bested at each turn as well. I didn't know this much about Spina bifida either and your way of explaining as you share your family story is excellent writing. Thank you!