Helen's Story

Helen's Story - Spina Bifida's Miracle Baby from Virginia Beach, Virginia

My name is Steve Adams. Let me share Helen's story with you!

THE DIAGNOSIS:

In June of 1998, my wife Eva and I were informed that our unborn daughter, Helen Rose, had been diagnosed with Spina Bifida. That is a neural tube defect where the spinal cord fails to completely develop. When this happens, there are many common problems that can (and usually do) occur in the baby's development. Such problems are Hydrocephalus (water on the brain), paralysis below the defect in the spine, clubbed feet, bowel and bladder dysfunction, just to name a few. There are about 1500 babies born each year in the United States with Spina Bifida. The reasons for this are not quite clear, but there is a link between a lack of Folic Acid in the mother's diet and Spina Bifida.

THE REACTION:

We were stunned! We are both healthy adults. Our 6 year old daughter, Patti Rae, is healthy too. But the doctor at the University of Florida Medical Center explained that this can happen to ANYONE. After a few minutes of hugs, tears, and disbelief, we calmed down. The doctor then explained in detail what the problems associated with Spina Bifida were, and told us about many of the different things that modern day medicine can do to help...... except for one. The weeks then followed with continuous ultrasounds, examinations, and questions. My wife spent many hours going to the public libraries, checking out books and looking up any kind of information about Spina Bifida. We called support groups and family members for advice, and did alot of praying to the Lord for guidance. Guidance that would lead us to an AMAZING answer to our prayers.

THE ANSWER:

It  was a normal workday at STRIKEFIGHTER SQUADRON FIFTEEN, my command at NAS Cecil Field, Florida when I got an answer to our prayers. My friend, whom I had informed about the diagnosis, gave me a magazine article about an amazing, experimental surgery being performed at Vanderbilt University Medical Center in Nashville, Tenn. The procedure involved removing the mother's uterus, draining the amniotic fluid, surgically repairing the opening in the baby's back, putting the amniotic fluid back in, and reinserting the uterus back inside the mother. However, it was only done a few times before. There was no real proof that the procedure had any real benefit on the child, and the risks were quite great of pre-mature labor. The procedure was being done around 28 weeks gestation of the fetus. There had been one child born which had the surgery done and he would be able to walk. This was enough to make me believe that the answer was right before my eyes. I went home early and told my wife the wonderful news. After we cried a few tears, it was time to make a decision.

THE PHONE CALL:

I nervously dialed the phone number for Vanderbilt, but it was after hours and we left a message on an answering machine. We then waited impatiently for the return call. We did not have to wait long. The phone eventually rang and on the other end was Dr. Joseph Bruner, an OB GYN at Vanderbilt who was leading the experimental surgery. His voice was very calm. He then gave us details of the entire procedure. He stressed that this was experimental and there is a danger of going into labor during the surgery. He also told us that there was not enough evidence that lead the medical board to believe the procedure had any significant benefit to the child. My wife and I were then told to take some time to make a decision about the surgery.

THE DECISION:

After a few days of thinking, discussing, and praying, my wife and I made the decision to go through with the procedure. We want to be able to look our daughter in her eyes and tell her that Mommy and Daddy gave her the best chance that we could. Many plans now had to be made. We had lived in Jacksonville Florida now for 3 years. We owned a home in Virginia Beach, 2 miles from Eva's parents, which we had been renting out. We then decided that it would be best if we moved Eva and Patti back to Virginia. I was getting prepared for an upcoming deployment to the Persian Gulf and we felt that through the pregnancy, childbirth, and afterwards that Eva should be where someone could care for her, the baby, and Patti while I was gone. I would stay with the command in Florida and have to make trips home on the weekend to see my family when we were not out to sea. Or so I thought. I requested a month of leave to move my family back up to Virginia, and to take Eva out to Vanderbilt for the surgery. My C.O. told me that he and the command were behind us 100 percent and that they would help us out in any way that they could. We then found ourselves on our way driving back up to Virginia. After being greeted by a blown hot water heater and other minor problems, we had moved back into our home. But in only 5 days we would be finding ourselves leaving for Vandy!

VANDERBILT:

Our road trip to Nashville was uneventful. The next morning, we arrived at Vanderbilt and were greeted by a sincere staff. We then were introduced to Susan Bauman. She was the public relations expert and also the one with the great burden of organizing the events for all the couples who elected to have the surgery done. She was one of the most kindest and understanding people we have ever met. After a short interview, we then started 2 days of preparation and interviews. Our first interview, we met with Dr. Bruner. He was younger than we had expected. I guess we thought that doctors of this kind were old, for whatever reason, I don't know. An initial ultrasound was done to determine the extent of the damage to the spinal cord, the amount of Hydrocephalus, and other things associated with Spina Bifida. We were told that the lesion went from T-12 to S-2 on the spine. We could not believe it was so large. We had originally been told in Florida that it was at the lower lumbar section. Dr. Bruner then told us that it is sometimes hard to see the lesion and it is easily misjudged during the first trimester. After a few tears, we then were looking at our little girl on the ultrasound monitor. We were told that the baby was in a good position and it looked good for surgery. Dr. Bruner told us about the surgery they had just done on a baby that morning and it went fine. We even got to meet the husband and wife. The woman told Eva she was in a little bit of pain from the surgery, but she was fine. We were also told about the lady who went into pre-mature labor during the operation and delivered her baby at 28 weeks gestation. After that, we were led to the neo-natal intensive care unit. The doctor in charge of the NICU tried to talk us out of having the procedure. He said the risk of pre-mature labor was great. We got to see the baby that was born at 28 weeks. He was hooked up to all sorts of machines and alarms. I almost cried. But since the lesion was so high and large, we decided that it was in the baby's best interest to keep going with the procedure. We then talked to Dr. Tulipan. He was the neurosurgeon who would be doing the operation on little Helen. The next day, an extensive psychological exam was done by the board of ethics. They were to determine if we had chosen this surgery wisely and that we were good candidates. It turned out that we were. Since our insurance company would not cover the hospital bill, we then had to see the financial consultant for payment arrangements. And then we were almost ready. We had the next day to rest and have some time alone before the operation.

TIME FOR SURGERY:

The next day, we met with the doctors, nurses, and anesthesiologist who would be doing the surgery. Eva got changed into a robe and it was time for the epidural. Before we knew it, she was on her way. Shelly, the nurse, told me she would call with an update every 5 minutes, all through the surgery. I was waiting nervously. Then, call by call, Shelly was telling me how well it was going. An hour and 5 minutes later, it was over. Eva was brought back to the recovery room where she was already awake, but a little slow from the medicines. Dr. Bruner told us that everything went great and we must now wait to make sure there were no contractions. Eva was then placed on a Tribunaline pump to give her a constant injection to keep her uterus from contracting. The cost for that was normally $300 a day, but a company called Matria, was doing it free of charge. (More miracles) After a day or two, we were on our way  back home. If all goes right, the baby will be here on November 14.

RIGHT WENT WRONG:

I was on detachment in Fallon, Nevada when an AMCROSS message arrived. It said that I needed to get home right away. The baby had severe Hydrocephalous and would have to be taken early. So I soon found myself on the way back home. When I landed in Norfolk, VA, I was greeted by my daughter and Mother-in-law. After I hugged my daughter, I found out that an emergency c-section had to be performed to save my wife and the baby. I was in the air at 40,000 feet when it all happened. The day was October 7, 1998.

LITTLE HELEN ROSE:

Once I got to Portsmouth Naval Hospital, I anxiously went to the NICU. There she was...Helen Rose Adams. She was 5 1/2 weeks pre-mature. Her weight was 5 lbs 5oz. She was being given oxygen but other than that, she was on her own! Then, I noticed something. She was kicking her legs! I reached in and tickled her tiny feet. She had full sensation and movement in her lower body. She could even curl her little toes up. I started to cry. It was a modern day miracle! But the doctors said that the Hydrocephalous was severe and she was going to have to have a shunt installed in her head in order to drain the fluid from her brain. They said not to worry, it is common. I was not worried, I was loving my new daughter.

EVA'S CLOSE CALL:

After a few minutes with my baby, I went to see Eva. She was quite out of it, but still in good spirits. She had lost 2/3 of her blood. Her placenta had ripped away from her uterus and caused severe internal bleeding. She had to have a blood transfusion. Dr. Eggleston, who is the Chief of Fetal Surgery at Portsmouth, was the one who made the decision to do the c-section. It is to him and to the Good Lord who I will forever be grateful to for saving both my wife and daughter's lives.

HELEN'S DILEMMA:

Eva was soon released. But Helen had many obstacles to overcome. She got her shunt put in when she was only 3 days old. LCDR McDanials, a neurosurgeon at Portsmouth, is Helen's doctor. He is a very professional man and gives 110 percent to all his patients. The first shunt was put in and in 10 days or so, Helen was released to go home. But that stay at home was soon cut short when she got an infection in her shunt. She then developed spinal meningitis. Just after the 2nd shunt was installed, she developed yet another infection, and the process had to start all over again.

GOING HOME:

 Like they say, three is a charm! After the 3rd shunt was put in, Helen was doing great. And on New Years Eve, we received a call from the hospital that Helen could finally go home! We were ecstatic! It was finally time for our little miracle baby to go home, where she belongs. After countless days and nights of driving to and from the hospital, after all the surgeries (THERE WERE 10), after all the close calls, SHE CAME HOME! Helen is doing wonderfully. Doctors expect her to walk. She has normal bladder and bowel functions, but it is too early to know whether or not she will have complete control of them. But the doctors are pretty optimistic. She just turned 3 months old on the 7th of Jan and she is holding her head up, rolling over, and scooting just fine. She will have to keep the shunt in all of her life. But that is something we can live with. Especially when we were informed that our daughter should be a paraplegic!

MORE GOOD NEWS

I was informed by my command, VFA-15 Valions, that I was being sent to the USS Theodore Roosevelt for a temporary job assignment. How is that good news you ask? Well, my command is currently stationed at NAS Cecil Field, Florida. If it was not for the job assignment, I would have had to return to Florida until our upcoming deployment. It seems that we are being taken care of. I will forever be thankful!

MORAL SUPPORT:

I have to admit, it has not been easy! There has been a lot going on in our lives since we first found out about the Spina Bifida. But there are 2 special people that I need to introduce. They are Kathy and Gerard Allard, Eva's parents. They have been through this whole ordeal right along with us. It has been especially hard on Kathy. She has MS. But she has been right there with Eva when I had to be away. This might have turned out a lot different if it was not for their love and support. Thanks Mom and Dad! My family, unfortunately, lives all the way on the west coast in Washington. They have been supporting all of our decisions, and are now waiting (impatiently) for a chance to finally meet little Helen Rose. I hope we can make it out there soon.

FINAL THOUGHTS:

I am sorry for such a lengthy story, but my wife and I want the entire world to know that there IS hope for children with Spina Bifida. Every decision that we made, we made out of love for Helen. Some of you may think that we put our daughter in too much danger for something that has not even been proven effective yet. We respect your feelings. But just for one moment, pretend that you were that little boy or girl who was born with Spina Bifida and who's Mom and Dad had decided NOT to go through with the surgery. How would you feel, knowing that there was the possibility you would have been able to walk or live a lot better lifestyle than what you were able to but your parents, for some reason, did not elect to have the surgery done. I truly believe that we were called to do this, in hopes that all children can have the same chance that Helen has. Thank you for letting us share this with you.  Please spread the word!!

Sincerely,

Steve, Eva, Patti Rae, and Helen Rose Adams

A special thank you to Diane Bennett and The Navy and Marine Corps Relief Society of Jacksonville and to The Spina Bifida Association of Jacksonville for their wonderful financial contributions towards Helen's medical expenses which were not covered by  our insurance.

Thank you to everyone who has been involved with Helen's life. Without all of you, it would not have been possible.

To my wife: Eva, you have gone through some of the toughest times of your life. You did it out of love for our little girl. I will love you, and admire you FOREVER!