Family Stories; Jeffery Ankenman

On March 16, 1999, our family was completed by the safe arrival of our second son, Jeffrey. We had Matthew only 19 ½ months earlier and he was so healthy and so much fun to have that we knew we wanted another one right away. Life couldn't have been better. I had a planned C-section that went exceptionally well. My husband Gary and I talked all though the delivery: anticipating what the baby will look like, what Matthew would do the first time he saw his little brother, etc. Jeffrey was born and scored 10 on the Apgar scale. He was so beautiful! We were taken to the recovery room where I nursed him right away. Great little feeder, I thought, just like his big brother.

Jeffrey roomed in with me and I took him in bed with me. I spent most of the night just staring at him. That night I had to wake Jeffrey up to feed. I asked if this was unusual and I was told it takes a lot out of a child to be born. The second day, I nursed and nursed him. He knew how to latch on very well, but after a few sucks, he wouldn't eat anymore. Three student nurses, who watched over Jeffrey attentively, along with the regular nurses that came in and out, voiced their concerns to the doctor on call. They weighed him and he lost more than he should have in that short time. He was taken to “Special Care Nursery.”

This was the beginning of our worst nightmare. The doctor gave Jeffrey and antibiotic in case he had an infection. He was hooked up to an IV and heart monitors and placed in an incubator. On day three, I was told that Jeffrey was staying and that I had to go home. Jeffrey finally passed the meconium. Doctors still felt he was just a fussy eater. They also thought there was a chance that he was a preemie. As my husband Gary carried out the empty car seat out of the hospital, I could feel the tears coming and I couldn't stop. I couldn't believe what was happening. I went back and forth to the hospital to nurse Jeffrey. My heartstrings were being pulled, as Matthew would cry every time I left to go to the hospital where is baby brother was. I had Gary 's Dad come to baby sit Matthew during the day and my Mother come at night as Gary and I went together every night to the hospital to be with our baby.

All this time, Jeffrey was still being fed my breast milk. When I wasn't there for the middle of the night feeds, the nurses used a tube that they put down his throat into his stomach and fed the milk to him that way. Little did they know they were killing Jeffrey. I remember getting a call after I came home from a feeding and the nurse asked if I had chocolate recently and I answered that I had a chocolate chip cookie. The nurse said that Jeffrey threw up and the chocolate was probably too rich for him. I had only one cookie but agreed I wouldn't eat anymore. They weighed all the babies in Special Care Nursery at night and Jeffrey was losing weight not gaining. They didn't want him to leave the hospital until he gained weight and ate better. That was never going to happen. He also wasn't having regular bowel movements. We were in a nightmare and we couldn't get out of it. I used to get to the hospital before the doctors would do their rounds so I could talk to them about Jeffrey. They were stumped, but again thought he could be a preemie. I was pretty sure he wasn't a preemie. On Day 17, I spoke to a doctor (Dr. Zajdman, now both boys pediatrician) about letting me take Jeffrey home. I thought it would be much easier to feed him at home. We couldn't go on like this too much longer. It was taking its toll on Gary 's Dad, my Mother, Matthew, Gary and I. Jeffrey was off all monitors and the doctor agreed we could take him home the next day.

We went to the hospital before 7:00am to take our son home. That weekend Jeffrey did not eat too badly. I switched from breast milk to formula and thought that was the answer. I questioned the quality of my breast milk as I wasn't eating or sleeping and under tremendous stress. Day 21. It was taking me an hour to feed Jeffrey 1 ½ ounces of formula. I started to use a syringe. I remember the name of the pediatrician and I called his office around 10:00p.m. Jeffrey was in pain and hasn't had a bowel movement in two days. The doctor on call told me to buy suppositories for infants, which my husband picked up on his way home from a late meeting. They worked! Day 22, I tried to feed Jeffrey all day. He took about an ounce every two hours. My mother suggested I give him water. He took that no problem! Day 23. I begged Gary not to go to work. I was scared. Something was wrong with our baby and even the hospital didn't know what. He had to go. Bills have to be paid! In the meantime, I had Matthew who just turned 20 months. He wants to play. I was under so much stress. I didn't want to answer the phone to anyone. I had heard all the “my kid was a fussy eater too and my kid vomited the first five moths of life.” I knew they meant well, but I knew I wasn't dealing with just a fussy eater, something was so seriously wrong here.

Day 24, I called the same pediatrician and asked if I could bring Jeffrey in. The receptionist told me the doctor wasn't taking any more patients. She suggested that if he was that bad I should take him to the hospital. She didn't know we just spent 18 days there and he didn't improve. I got off the phone, cried, and than picked up the phone again and this time I lied to the receptionist. I told her that Dr. Zajdman requested that I take Jeffrey in to see him a week after we got home from Special Care Nursery. She immediately gave me an appointment. I quickly packed up Jeffrey and Matthew and drove to the doctor's office. Dr. Zajdman looked at him, weighed him, listened to my story, and checked him out. I told Dr. Zajdman that he did eat a tiny bit more than the previous day. He told me to take him back in four days.

Day 28. Back to the doctor's office. This time Gary came with us. Dr. Zajdman weighed Jeffrey and found he had lost weight in the 4-day period. I told the doctor that we had to set our clocks for every two hours to try to feed Jeffrey and that Jeffrey was not waking up for his feeds. He never cried unless he was constipated. We were using the suppositories on him every other night now. Dr. Zajdman ordered blood work for Jeffrey and sent us directly to the hospital to get it done right away. When they finished drawing the blood and urine sample, we were told that the doctor would call us in two to three days. We got the call an hour later.

Dr. Zajdman told us to find a baby sitter for Matthew and admit Jeffrey to Credit Valley Hospital (where he as born and stayed for 18 days) immediately. He said he has some sort of metabolic problem. I didn't know what he meant. I only asked, “Is he going to die?” and Dr. Zajdman truthfully answered, “I don't know.”

I took Jeffrey into ICU, while Gary registered him. There was a team ready for him. They hooked him up to the IV (in his head; it was the fasted vein they could find). He was placed backing an incubator. Gary and I were asked questions about our family history and metabolic problems. There were none. They needed to watch him. Dr. Zajdman's wife, also a pediatrician, was looking after him, and was on the phone to her husband discussing Jeffrey most of the night. She was also in touch with Sick Kids Hospital in Toronto . Jeffrey stayed that night and the next day doctors were looking for the quickest way to send Jeffrey's urine specimen to Sick Kids. Gary volunteered to go and they strongly advised me to go too. I didn't want to leave Jeffrey, but I did listen to them. Sick Kids is only about 30 minutes away without traffic. While were parking at Sick Kids, we got a call on our cell phone from a nurse at Credit Valley Hospital to tell us to stay there, that Jeffrey was on his way down by ambulance. We were to register him and wait on the 6 th floor for him. We waited in his room. When Jeffrey arrived, he was poked and prodded and more blood drawn. We were told to make ourselves comfortable that we would be staying a few days. We made arrangements for Matthew. I missed Matthew so much. My heart was so broken. The following days, a group of doctors came in to speak to Gary and I. They told us that Jeffrey has Methylmalonic Acidemia. They needed to take a biopsy and send it to Montreal to see what type of MMA he has. We were assured that he was going to be fine and that it was a diet-controlled disease.

The doctors explained that Jeffrey is missing an enzyme that breaks down protein. This is why he can't have breast milk or store bought formula. He is on a special medical formula with the protein already broken down. He could have easily died or went into coma or seizure like many of his MMA friends have! Jeffrey was now one month old and I remember being so scared to feed him his special formula in the hospital in case they had it wrong and he still wouldn't take it. Gary fed him and he gulped it up like he was a starved baby! It was so wonderful to see!

It wasn't long after that I found out that we could have found out within a week of Jeffrey being born that he had MMA. I was furious! Why wasn't I given that choice? In Toronto , Ontario , Canada we only screen babies for 2 conditions, Thyroid and PKU. If Jeffrey had been born in Nova Scotia or Saskatchewan , we would have known within a week, but not in our big city of Toronto . The money spent on Jeffrey in the hospital certainly surpassed the amount of money it would have cost to screen properly with the expanded newborn screening. The biggest catcher is the machine is made right outside Toronto . This machine is being used all over the United States, saving babies everyday, meanwhile letting them die in most parts of Canada.

I can deal with a child with MMA. Newborn screening wouldn't have changed that. What it would have changed is his first month of life and it would have given him a much better chance of living a normal healthy life. Every baby deserves that chance!

Jeffrey brightens up every room he goes into. He is the sweetest almost 5 year old there is. He is always smiling and singing. With the help of lots of early intervention programs supplied by ErinOak, we believe Jeffery is right on track with his peers now. We couldn't imagine life without Jeffrey, but it was almost a reality.

Bernadette & Gary Ankenmann

bernandtheboys@rogers.com