My name is Beth and I am 35 years old now. I live in Minnesota with my husband of almost 15 years, daughter Sara age 6-1/2 and son Joshua, age 3. Josh has the brachial plexus injury, Erbs Klumpke's and was born 7/20/95. My email address is email@example.com FYI, this is a long but memorable story about survival.
My pregnancy with Josh went smoothly. I felt like I was large and keep seeking reassurance but was only asked, How much did your daughter weigh? 7-1/2 pounds. This baby should weigh 8-1/2 pounds. Because I had been keeping record of my temperature to concieve there was no question about when I had become pregnant. This is why no ultrasound was done. I did have to repeat my glucose challenge test which came back high but in normal range.
A few days before delivery I had a trickle of fluid. It was over the weekend so I called the on call midwife. Because the fluid hadn't continued (with my daughter I continued and was a lot more) they were not concerned. A few days later I had another episode but again it did not continue at all.
On Wednesday night (I dont actually remember the week day) as I prepared for bed I was feeling uncomfortable. I could not sleep, I was in labor. We arrived at the hospital a few minutes after midnight. I labored and was ready to push after 5 am. I pushed and pushed. There were no excited reassurances of seeing the babies head like with my daughters delivery. Then they saw the top of the head but it wasnt making significant progress. I later learned it ws the turtle sign and baby was having shoulder dystocia. Eventually I was offered a vacuum extraction. I thought, this is how we got my daugher out and that had worked well so why not. I thought this would be over soon. We waited and waited for the doctor to come in, it was after 7 am now. Then my certified nurse midwifes shift ended and I had a change of staff. I was so disappointed by this, I thought they stuck it out with you. It was so close to being over.
The doctor came and did not do any exam or evaluation of my situation, just got down to business. He applied the vacuum. He pulled and pulled and pulled. I felt the sting of my skin tearing in a 4th degree laceration. Later my husband said that the doctors arms were shaking from the amount of strength he was applying. Finally the head was delivered. I waited for a cry. There was none. The doctor was working still on getting the rest of the baby out, the nurse was on the table on top of me pushing. I saw the fear in her eyes. The doctor said that "if this doesnt work we will have to go for a C-section. I said "are you kidding". He wasnt. Up until this point I had been screaming in pain. I felt like my pelvic bones were being split apart like a wishbone in a turkey. The pain was excruciating. I actually was looking from above at my situation. I wondered whose legs those were white and flailing around up in the air. My mind could not handle the pain. They were my legs.
My husband nearly fainted and had to be taken aside to a chair in the room. He thought Joshs head was going to be pulled off becuse he had seen the twisting it went through. He also thought I would die.
The nurse now told me that the doctor had pushed the babies head back (called a Zanelli maneuver). It had floated back. I later learned that babies often dont survive this ordeal. God was gracious and protected my baby despite my prayers to end my pain. Also often the baby has to pushed back with as much force as it was pulled out but becuase of the shoulder dystocia and hyperextension at the neck Joshs head just floated back.
Going down the hall to the OR was like in the movies. I could see the ceiling lights above me as I was whisked down the hall on my back. I was so scared that Josh had taken a breath and was now dying inside of me but God had heard our prayers. The operating room was fully staffed and ready to go for soneone elses surgery but the doctor was late. I was quickly put under and in 11 minutes from leaving my hospital room, room 13, Josh was born. He was 10 pounds, .06 ounces.
When I woke up from my vertical c-section and the doctor said I had a baby boy who was fine but his arm was damaged. I was happy to have a live baby, and a BOY. I spent my remaining 4 days in the hospital crying because I was so traumatized by all of this.
Before I relay the 2nd part of Joshs story I want to reassure you that today he is 3-1/2, is very bright and intelligent. He is not behind mentally and is ahead in some ways like socially and with talking abilities. Dr. Nath said Josh is an intelligent boy. Back to my story.
Josh was jaundiced and was discharged with instructions to feed every 2 hours. A home health nurse was going to stop by on day 5 to check on things. We spent Joshs first night at home in our family room with him sleeping in a bassinet and Rick and I sleeping on the couch and chair with an alarm clock set every 2 hours. Around 3 am Josh wasnt rousing well from sleep, not as interested in eating and as time went on he seemed a bit warm. I knew the nurse was coming at 8 and we were anxious about her getting there to check on things. The nurse came and found that Josh had a temperature.
She called the pediatritian to report this. I was put on the phone and told in a gentle and caring way that little babies should not have temperatures and Josh would need to go back to the hospital. We drove him back there. When my primary nurse saw me she said "I thought you would be back" referring to all my injuries from delivery. I said no, its because of Josh. There was blood work done and we were told that his kidneys werent working right. His kidney function tests were signiffincalty elevated. This is why I didnt have much amniotic fluid and hadnt leaked continuously when my water broke a few days before delivery.
Josh was transfered to the University of Minnesota and spent 2 months there. The only night he had been home we never took his picture. I regretted this. He was a good baby (and is a wonderful 3 y/o) and got a lot of attention. They did not have clothes to fit him, most babies in NICU are premies, not 10 pounds. We often laughed about this.
Josh underwent his first surgery at 9 days old to have a dialysis catheter put in. He had dialysis every night for 11 hours. He had another surgery for a bladder opening and hydroceles. I spent many hours at the hospital with Josh. Strangers were caring for my child. I had antoher daughter at home to also give some time to and a lot of physical healing to do. I pumped my milk and male nurses gave it to my baby. I was always SO concerned that the changing shifts of nurses (1 on 1 care for Josh in isolation) would protect his arm. This added so much stress to our situation. They had OT visit him daily and made a ROM poster for his hospital crib headboard to show how to do his therpay. They took polaroids of him in the different positions.
At 2 months, 3 days (day after discharge) we went back to the U of M and saw a neurologist, Dr. Awasthi. He told us, the place people go for brachial plexus surgeries is St. Louis or Texas. Life was already so overwhelming, I could not believe what he was telling me. The doctor injured him and we have to travel with our dialysis baby. I saw other doctors here in MN and none would help. Finally it came to a point where the rest of Joshs medical care was put on hold pending our decision on what to do with Joshs arm. His kidney doctors wanted any other surgeries out of the way. We had a month to decide. This was around Christmas time, 1995.
We chose to go to Texas Childrens Hospital. This was so overwhelming but it worked out great. A dialysis machine and supplies were flown down by the medical supply company. The hotel stored it for us until our arrival in February. I cried on the plane trip to Texas. I felt so scared. They have a pediatric kidney team at TCH and Joshs doctors had been in contact with them. We left Sara at home. We had 1 suitcase for clothing for Josh, myself and my husband. The other suitcases contained diapers, medicines, feeding machine, blood pressure monitor like at doctors office on a pole, tubing kits for dialysis machine, oh, and a baby stroller and car seat.
Joshs surgery went well. It was his most painful surgery, the primary surgery at TCH. We were pleased with the results. They were only expected to be a 10% improvement and were about that. We were doing weekly OT and PT before and after surgery. The school district provided the OT.
Josh had a few other surgeries on his urethra and to close the extra bladder opening. We were preparing now for his BIG surgery which we were told about when he was just days old.
On 7/3/96, at 11-1/2 months of age Joshua received my left kidney at the University of MN with Dr. Najarian as his surgeon. I am overweight and so the Doctor wanted to look for another donor. I pleaded with him and ended up stepping into a vacant exam room and showing him my C-section scar as evidence that I was able to heal well despite having so much excess around my abdomen. ( this was a signifficant link between the 2 stories becuse w/o a C-section I might not have had this chance to give to Josh which was medically the best chance for long term kidney function).
Josh has done remarkably and is a wonderful kid. He has had no rejection and takes his meds well. The blood draws continue to be my most difficult thing. After this surgery Josh had a new strength to do things and made much more progress. He was able to eat better and had more energy.
My recovery from this was painful but 2 weeks afterwards I went to a family reunion. I attended a high school reunion on the evening of July 20th, Joshs first birthday. He was unexpectedly still hospitalized due to 2 infections in his central line. We did bring him home on a 6 hour pass though to have a birthday party (this was inbetween IV antibiotic doses). He had his first tub bath that day (had to sponge bath before because of the catheter) and his sister joined him in the tub. It was a wonderful celebration.
He had no surgeries that 2nd year (was hospitalized only once for a bronchiolitis, a normal kid thing). On his 2nd birthday I kept referring to it as his first birthday. I was so excited to have him wake up in his own bed at home with us.
OK, so now we learned about the quad surgery at Texas childrens hospital when we went to the National Healthcare conference in Oshkosh, Wisconson. We planned this but werent rushing into things. We needed so time to have a normal family live and have acheived that now. On 11/4/98 Josh had the quad surgery. The splint came off the week before Christmas. We cried happy tears! Josh hugged us around the neck using both arms independently (without one assisting the other) for the first time.
Josh has taught us many lessons. He is a miraculous wonder. He is very charming and loveable. He is potty trained (yeah, everything works) and learned this and dressing himself this year with much help from me. He is a very determined boy though. God has protected Josh from many potential problems and answered many prayers by having Josh get so much functional return in his arm from surgery.
I know I have gone on and on, sorry for that. I just needed to tell my story of
Joshua. Choices we made help me not to feel like a victim anymore, but a
We just had a scary bout with Josh's kidney and some other labs being elevated. He had to get several repeat labs, a renal ultrasound and then a renogram which involves an IV for a dye study. His doctor said there is "nothing to worry about". What a lot of extra effort for that statement.
Beth, Josh's Mom
April 28th 1999