Your dad and I were married March 21st, ’70. We got the notice he was drafted into the army the same day I found out I was pregnant with your sister, Jamie, sometime in May. He spent June through September in Basic and AIT training then left for Viet Nam in October ’70. He was gone until the following October ’71. Having missed almost my whole pregnancy, delivery and the first 10 months of Jamie’s life, I wanted to share that experience with him with another child. He asked me if we could wait until he got to know his first child before we had another one and I agreed. All he ever wanted to do was be an Army helicopter pilot. While trying to lose some weight because he was a tad too heavy for program entry, we got pregnant with you sometime in April.*
I had a feeling all through my pregnancy something was wrong but was poo pooed if I said it out loud. I learned to keep quiet. You were born at 1:03pm, February 2nd at Ireland Army Hospital in Ft. Knox, KY. Your father was in the delivery room with me. I had already gone through this before without him and was most anxious to do this again with him. As soon as you were born, I knew something was wrong because instead of draping you across my abdomen like they did with Jamie, they whisked off with you to another room. I had already made arrangement with the delivery staff to breast feed you on the table while they took out the placenta and you were not there. They would not answer any of my questions. However, you did return and they let me fed you for a few minutes before whisking you away again. Your dad having never gone through this was not concerned … I was!! As soon as I was allowed up I was told you were in ICU Neo-natal and I could go see you and that you had big feet. Your dad laughed and said everyone in his family had big feet so it shouldn’t be a concern. Once at the ICU, we were garbed all in green from head to foot. I observed this big 8 pound baby with all the sick little tiny preemies and wondered at their decision. When I got to you, I unwrapped you. I looked at the nurse and ask if this was the reason for all the concern? To me you looked just fine, healthy and robust, with big feet. The nurse told me usually with one birth defect others follow. Great! Now I’m devastated!!!!
The pediatrician came to share with us what they had observed … your malformed feet … and told us they were running more tests to make sure there were no other anomalies. The wait was extremely painful in many ways because I also had decided to breast fed and was not allowed to feed you. OUCH!! The tests showed no other anomalies except for the birthmark on your chest, under your arm and patches down your back. We were so relieved and ready to go home with you. The peds were still concerned however and made an appointment with the birth defect clinic in Louisville for us the very day we were to be released from the hospital. I had brought sweats and house slippers to wear home so your dad was tasked to bring me good clothes I could wear and some good shoes. He forgot the shoes so on the way to the clinic we had to stop and buy me shoes. I still remember them. Dr. Dino ran many many tests. They also took pictures I have included with this story. The nurse who took the pictures was so sweet. She said from now on the focus will be with your feet with the entire medical field but your face was so cute she just had to take a picture. What a wonderful gift that was to this mother!!! Preliminary diagnosis, neurofibromatosis. The birthmark or café ole marks as they were called cinched it. They did a punch biopsy and determined the birthmark was a collection of bone cells due to the over growth of bone in your feet during pregnancy. It could have landed anywhere and I was thankful it landed on your skin and not on a vital organ like your brain!**
Dr. Dino ordered a gene/chromosome test to see which side of the family had this hereditary disease. We were also told to go home to family to get as much family history as possible. You were two weeks old when your dad was given an emergency leave to go to Point Pleasant. I placed you in my mother’s arms and Jamie immediately said to Mema, “She wants mom to hold her!” So started the sibling rivalry. We collected no useful information and went home for the next step which was to see Dr. Dino again for a follow-up. She informed us you would need both your feet amputated. That the rapid growth that started during pregnancy didn’t stop after pregnancy and eventually your feet would be too big to deal with. They told us you may never walk or if you did, it would be with a shuffle. They also told us you’d never run, jump, hop, skip or climb stairs. We left feeling defeated. How could this be? We decided no one was going to cut off your God given feet and we would find some other way. One of us didn’t have to convince the other … we were in perfect agreement and to us there was no other choice.
We went back to Ireland Army Hospital and ask to be released to the economy (you have to do that and have the military pay for your care if a military hospital is nearby) and get a second diagnosis. We took you to several other doctors at big name hospitals in the southeast including Shriner’s but all had the same diagnosis. Amputate! I remember well one of those doctors, Dr. Harkess. He read your records, did his own physical and tests and sat down across his desk from us and gave the same diagnosis. Your feet needed to be amputated. He continued on to say that we were like the parents of a child with leukemia going from doctor to doctor to find one to tell them what they wanted to hear. Fact is, he said, eventually both feet will have to be amputated and further more he would not be the one to do it because he didn’t like dealing with parents like us. HOLY COW!!! If we weren’t crushed or devastated before we certainly were then. On the way home I looked at your dad and asked him if we were wrong. They had the medical degrees not us … could it be we were wrong? He said absolutely not and we would press on. We tucked our tails under our legs and went back to Ireland Army hospital and asked for you to be seen by a military institution that could help you. The doctor left us in the waiting room while he checked out possibilities. He came back and said he could send us to Fitzsimmons in Ft. Carson CO or Walter Reed in Washington DC which one did we want to go to? We ask him to investigate and let us know the one best suited to take your case. We were informed that Dr. Nichols at Walter Reed had dealt with neurofibromatosis while stationed in Hong Kong. We were Washington DC bound within a few weeks.
You were 5 months old when we went on the first med evac plane to Walter Reed. You were retested in everything by both neuro-surgeons and orthopedic surgeons. Your diagnosis was changed upon further testing. They determined your birth defects were not the heredity disease neurofibromatosis but just an anomaly that couldn’t be pinpointed at this time and may never be pinpointed. They just called it “gigantism”.* Since it was not the original diagnosis which is a neuro disease the orthos got your case at Walter Reed and so started another chapter in our lives. It took 3 weeks to get to this diagnosis and nothing had been planned to stop the rapid growth in your feet. I wanted to go home to your dad and Jamie until they came to a decision but they would not release you and I would not leave you. It was finally determined after another week that you would have surgery on both feet … that they would not amputate but whittle away a little at a time until rapid growth had stopped. (The doctors were appalled that any doctor would jump to amputation before trying to save your God given feet first.) Your dad and I were thrilled to say the least. They would start by taking two toes off each foot and take out two rays from each foot breaking and angling the remaining 3 rays to bring in the width of your feet. It was further determined that they would bring in a specialist from Bethesda Hospital in Baltimore to over see this surgery and that two surgeons would do the surgery one on each foot. It took some time and some planning to get this lined up but you had surgery 5 weeks after entering Walter Reed. I called your dad in hysterics because they had me sign the paperwork to amputate your toes. I wondered … what if she would have rather had her toes even though they would be HUGE …. What is she would have rather had the amputation and a normal looking prosthetic foot rather that a foot mangled by surgery to stop rapid growth. I was beside myself making decisions for you at the tender age of 6 months. Your dad was so sweet and assured me you would not hold it against me that I signed away your toes. God is good … you never have!!! After a week, you were allowed to go home. I never was so happy in all my life!!! We had a return date to take off the cast and check your feet. I soon found out they wanted to do all that was involved with your care and so started the continuous trips to Walter Reed for what was necessary for us to save your feet. Never once did I go to Walter Reed for less than 2 weeks by med-evac. Every trip, even just a cast change, was 2 weeks long. I was really torn as Jamie was passed around to relatives and friends while I was with you.
You continued to have surgeries to whittle away, rotate bones, repair and rebuild your feet. We never expected you to walk (shuffle) at a normal age so we had been given or purchased a variety of sit and play places for you. At one year you were crawling. As a crawler will do, you would head to the steps and try to go up. When you were 13 months old, I put Jamie in charge of making sure you didn’t try to crawl up the stairs while I was in the kitchen cooking. (The kitchen was behind the stairs in the quarters we were living in at the time.) Jamie told me you were going up the stairs and wouldn’t get off for her. You always were rather stubborn!!! But I couldn’t stop what I was doing so I started yelling for you. Your first step was from those stairs, through the living room, through the dining room and into the kitchen. You could walk all along but nobody expected you to or prompted you to so you didn’t until I called for you. Your first step was 3 rooms long. What a celebration that was for both your dad and I!!! AND it wasn’t a shuffle. The doctors were astounded!! They put you in prescription shoes so your still forming bones would not change from the position they had placed them in while you walked. At $200 a pair which in the 70’s was a gold mine, we were in shell shock but didn’t budge in getting them we were so happy you could walk. We had to buy you two pairs that were 2 sizes different to make one pair then give it to the orthopedic store that put in the prescriptions written by the orthos at WR. We soon discovered you could run, jump, hop and eventually you skipped. What a miracle for us! Over the next 2 years, Walter Reed’s doctors continued their magic of whittling, rotating, repairing and rebuilding your feet. It was hard to continue to go there but YOU WERE WALKING ON YOUR OWN TWO GOD GIVEN FEET. You were always the healthy one in the hospital with dying babies all around you with various diseases. I was always so happy all you had was birth defects that could be hidden with shoes. Even though the doctors told us to keep you limited in your activities because the constant impact on your feet was not good and you’d end up in a wheel chair by the age of 40 if I didn’t. I was told to do that for you because you were too young to limit yourself until you were old enough to realize your limitations. Your Papa knew how bad you wanted to run Bloomsday and signed you and him up. Mema cried as you crossed the finish line. Actually, although upset with you both, I cried too! You have yet to realize those limitations!!!!!
- One time after you’d had surgery on both feet and was in double leg casts up to your butt cheeks, a soldier walked up to me at the commissary and said he’d been to Viet Nam and had seen lots of terrible horrible things but this took the cake. I realized later on he probably thought I had abused you and broke both your legs. We got lots of “funny looks”.
- Once I was so sick of the hospital and the nurses told me to see if I could check you out for a day to go to a park. I did and they released me to take you to a park. I was scared spitless but we headed on a bus in downtown DC to a beautiful park just me and you. It was a beautiful day and we enjoyed our outing but alas, we were never approved for another one.
- I remember being sick of hospitals and didn’t want to wait for the med-evac flight which may or may not take us directly home (sometimes we went to their home base Scott Air Force Base in Illinois and stayed there until a flight to our Fort came up which could be up to a week) and asked your dad if we could swing a ticket for a commercial flight home. He found the money and off we went in a taxi to Dulles Airport. I had $25 in my wallet for taxi and boy did he ever take us for a ride that took all 25 dollars … I learned a lesson that ride. At the airport, I got up to get us some treats from the vending machines with some change I found. You were, as usual, not allowed to walk because you’d just had a surgery, I had asked you to stay seated in my best mom voice. I looked back while getting a treat and you were getting off your seat to walk to me. I’ll yelled, “Miss”, to stop you and the lady beside me yelled right back at me, “What?” I was so embarrassed.
- Another trip, your dad got permission to take you to Walter Reed in the med evac helicopter he piloted. He flew over the Potomac River and by the Lincoln Memorial so we could see the sights. It was a GREAT flight. After your surgery and before you were due to go home, your dad informed me he was on his was to get us. He’d gotten permission for you to leave early. At the stop over refueling point on the way back to Ft. Bragg, he told me your uncle had died and we needed to get to Point Pleasant as soon as possible. That was such a miserable long trip for us all. While visiting your great grandmother, the funny Mama, after your uncle’s funeral you broke your casts at the heels. You were constantly clicking your heels and I would have to take you to get them reinforced. I could never keep you still or off your feet like I was told to have you do.
- One trip to get your casts changed made me so sad because I knew we’d be there at least two weeks just for a cast change and your dad, bless his heart, got a leave and drove us there. We stayed in a cheap motel, got your cast changed, and drove home. I loved having Jamie with us!!!!!
- One of our visits to WR, we got to meet Dianna whose father was stationed in the Philippians. She had the same “gigantism” you had, only in her hands. She had what they called nature bands that had formed on her fingers that was cutting her fingers off from blood supply they were growing so big so fast. I remember thinking once again how happy I was that your defects were in your feet hidden in your shoes.
- One time we were at WR because you needed to have most of your little toe amputated on your right foot. The anesthesiologist came to give me the normal routine of putting you under and you were standing there. You told him, I’m not going to breathe, I was so embarrassed but he said not to worry because sooner or later you’d have to breathe. J
- Another time you were at WR for surgery and usually you couldn’t eat or drink from bedtime to wake up time and then went for surgery but this particular time you were a little older and was having to wait. All the other kids had breakfast and you could not even have a drink of water. It was a battle. By the time they came to get you for surgery. You had stolen a piece of gum from a friend’s night stand. They cancelled surgery!!! I was so upset!! We had to wait until the next day! Boy I watched you like a hawk!!
- Another trip, Walter Reed decided to let the hospital at Ft. Rucker take off your cast after yet another surgery. We saw a doctor named … Dr. Goodenuf … yes Dr. Good Enough. I was told lots of follow up orders from WR for you and wanted to clarify with him if you were released from those orders. I asked if you could walk now, he said if you could walk I should let you, I ask if you could have a bath now, he said if you needed a bath I should give you one, I ask if you could wear shoes he said if we could afford them you should be wearing shoes. That’s the last time I saw him!!!! Decided Dr. Goodenuf wasn’t good enough for you!!!!!
*It was later brought to our attention that your birth defects could be a results of your dad being in Viet Nam and around the defoliant agent orange. We sent paperwork with test results to both a committee of people with both doctor and law degrees in Denver and another committee of like people in Boston. Both committees came to the same conclusion … but not before your dad died in a helicopter crash. He died not knowing the cause was agent orange. It had gone to his fatty tissue and there it set until he decided to lose weight. We had no idea!!
**Your birthmark had its own problems. The bone cells were incompatible with the skin cells and caused an itch/scratch syndrome. When you were 9 years old, they decided it needed to be removed. You know well the web that was formed under your arm and the resulting surgery so you could have full use of your arm. You are a miracle to me and many who know your whole story like Mema and Papa!!!