The Bachmann Family
Morgan Alexandra Bachmann was born in Okinawa Japan on March 26, 2000 with Spina Bifida. Prior to her birth, we were unaware of any problems with the baby. We thought we were going to the hospital to deliver our first child, a healthy baby girl. Within a few minutes after her birth, our world came crashing down around us. We were flown to Hawaii to receive medical care from Tripler Army Medical Center. Although we met many wonderful people there, we also had our first lesson in dealing with some in the medical field that don't necessarily know or care about our daughter's condition. Morgan's back was closed on her third day of life and she had a shunt placed a few days later because Morgan developed hydrocephalus. It seemed as if we would be on our way after two weeks of hospitalization but unfortunately, her back wouldn't heal and it required two more surgeries. After six weeks of having our lives stand still, Rich received orders to Pensacola, Florida and our adventure began.

Morgan is 4 years old now. She has had 9 surgeries so far. She had her back closed 3 times, 3 shunt placements/revisions, club foot release, hip surgery and chiari decompression. Despite this, she is a happy, intelligent, VERY verbal little girl that will win your heart in a second. She loves preschool, Sunday school and playing tea party with friends. It has been very challenging at times but we are so grateful and blessed to be her parents.

A note for new parents

After months of dreaming about attending ballet recitals, baseball games, ivy league graduations, getting a diagnosis of Spina Bifida can be devastating. This is especially true because most medical professionals will paint the WORST case scenario for you. Time and time again, people leave their OB's office feeling as if the world has ended and life will never contain joy again. Please know that the "worst case scenarios" do happen but not to a lot of us. As much as doctors would like us to think they know it all, they don't. Prenatal tests can give *some* clues to what the outcome will be but until the baby is here and developing, you never know. When we had Morgan, we were told she had NO movement below the waist because her lesion was L2 and then she moved. We were told she would probably not walk and would be delayed in all of her milestones. She rolled over at 5 months, sat up at 6 months, crawled at 7 months and began to attempt to stand at 8 months. She walked with a walker at 14 months and we were told that was the best we could hope for. At age 3, she began walking without the assistance of the walker. You will grieve this. You HAVE to grieve this. You will be moody, resentful of parents with healthy children and intolerant of people that still seem to stress over their "easy" lives. These feelings are all normal and don't judge yourself for having them. Soon you will begin to make peace and you CAN feel happiness and joy again. As you get to know your beautiful new baby, you will be amazed that you get ring side seats to watch such strength and determination develop. It is a great adventure to parent a child with such a wise soul. And by the way, you will learn that ballet recitals, baseball games and ivy league graduations CAN still happen!! Get as much early intervention as possible, accept help that is offered, love your baby with all of your heart and sit back and cherish the ride. Welcome to Holland.
A note for friends and family

If you are reading this then most likely you have a friend or family member that has just found out his or her baby will have spina bifida. First, let me applaud you for caring enough to research this and learn. Having a child with Spina Bifida will change your loved one forever. Some of the changes will be good and some not so good. The best gift you can give is patience. There are so many emotions that come with parenting a special needs child and life becomes a roller coaster at times. As much as you might try to understand, you won't be able to unless you have a child with special needs. So, how can you really help? I have several suggestions!! First, everyone is different. Some people want to be surrounded by visitors and others want to be alone. Ask what they want and then respect their wishes!! If they don't want calls and visits, send cards and flowers to let them know they aren't alone. Offer to keep the other children if there are any. The siblings can really feel left out during this time so doing something cool for them is great. Cook a meal. Hospital food is terrible and a nice home cooked meal can really lift spirits. If the baby stays in the hospital for a while, offer to sit with the baby and give the parents a break. Send the parents gift certificates to local restaurants so they can take a break together while the baby is in the hospital. If you want to send a gift, how about a tape recorder so that mom and dad can record themselves and let the nurses play it while mom and dad take breaks. Lullaby music is great to help drown out the beeps and alarms of the NICU. Many times the outfits that have been bought can't be worn because of the wires and such. Nice diaper shirts are great to have. Send mom and dad journals that they can use to write down feelings, information they don't want to forget or questions to ask the doctors. If you are a great friend or family member, you can offer to learn how to do some of the medical procedures (such as cathing) so you can give mom and dad a break when the baby comes home. Don't be offended if this one gets turned down. Half of the parents I know really want this offer and half would NEVER think of allowing someone else to do this. It can't hurt to offer though, right? Several parents have enjoyed gift certificates for house cleaning, help with house cleaning and help with lawn care. Gift certificates for food delivery are also helpful. The first months are spent back and forth to the doctor and a lot of time is spent learning so there is little time for basic housecleaning and cooking. Life will stabilize, happiness will return and a new "normal" will be established but it will take some time so never EVER forget to offer hugs and a shoulder to cry on.


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