Matthew's story
It has taken three years for me to sit down to write out his story.> Here goes, and I apologize for its length but so much happened in such a short life.
In the fall of 1994, after almost 4 years of trying to get pregnant, I reached a point where I gave up on ever getting pregnant. We had had an ectopic pregnancy in 1991. I had lost one of my tubes, and we had been unsuccessful ever since.
It was such a horrible and hard decision to make, and it was only worsened when I went to my OB for a routine yearly checkup. He told me that he could not tell my why or if I ever would get pregnant.(let me interject here that I had also been on fertility drugs for most of those 4 years).
My appointment was on a Friday, and for some reason Sunday I realized that for the first time in 4 years, I had miscalculated when my period was to have started. I WAS LATE!!! I bought a pregnancy test that day and performed it the next morning. It was Positive!!! I raced to the store before my husband woke up (he had no idea I was late) and bought a baby toy to give to him.I woke him up, gave him the toy and said "Good morning, DADDY". Needless to say, it was the happiest day of our lives.
The pregnancy progressed along fine. My OB did ultrasounds in the office every visit because of my history of an ectopic pregnancy.
At about 15 weeks, he detected something on the ultrasound, but told me he wanted me to just get things checked out at Dekalb Medical Center by the perinatologist there. My doctor said that he felt that what he was seeing was only because his equipment was not advanced enough to give him the details he wanted. Basically, the "problem" he saw was with his ultrasound machine, not with my baby.
I was not concerned. I too believed that it was just a problem with the machine.
December 20, 1996, my husband, my two stepchildren, and I drove to Dekalb Medical Center for my appointment.
That very morning, I thought for just a moment- what if something is wrong with the baby, but I quickly dismissed that thought. We arrived, my stepchildren waited in the waiting room while my husband and I went in for the ultrasound.
The ultrasonographer began preparing my abdomen, and she asked us why we had been referred there. We explained that my OB wanted a more detailed ultrasound because he felt like he wasn't getting a clear enough picture. She proceeded to do the ultrasound and soon uncovered a problem.
The first perinatologist came in ( I will call him Dr. D) and began showing us the problem on the ultrasound. Our child (we didn't yet know boy or girl) had a HUGE bladder, NO
amniotic fluid, and a blocked urethra. It was explained to us that the amniotic fluid surrounding babies is actually the fluid that babies release from their bladders. Our child's urethra (which is the tube that extends from the bladder out of your body and through which you urinate) was blocked. This resulted in the fluid backing up into the bladder and making it huge.
As our baby kept swallowing the little amniotic fluid that was produced otherwise, there was no amniotic fluid to surround our child. Dr. D stated that usually when there was this sort of problem, there would be other significant medical problems and deformities also. He stated that although our child was alive now, he could die at any moment. Then, he told us they would perform an abortion that same day if we so chose...
My husband and I told him no, and asked if we had any other options. Dr. D. said we could drain off the fluid from his bladder to relieve the pressure via an amniocentesis. They would also run tests on this fluid to check on the baby's health. My husband and I agreed to this, and Dr. D. called in a second perinatologist to perform the amniocentesis because of our child's position.
The second perinatologist ( Dr. S) had to withdraw fluid from our child's bladder and avoid his spinal column which was in the way. Dr. S completed the procedure, and we left to go try to explain to our stepchildren what had gone terribly wrong.
I remember calling my work from that appointment to tell them I would not be in. I barely got out that there was a problem before I ran from the building weeping.
I remember that evening at my lowest of lows thinking that I could not go on day to day not knowing if my child was dead or alive inside of me.
For a moment, I wanted an abortion- I had been told he would die, and I could not go on with the uncertainty of his life or death. I waited, I prayed, I got support from family and friends, and I got a phone call. My health insurance company immediately appoints its patients a case manager when they are referred for high resolution ultrasounds. I was now considered a high risk OB patient even before the perinatologists had discovered a problem.
Well, it just so happened that when we arrived home from the ultrasound, my case manager called me to check up on me. She had no idea what we had been through that day or that there was even a problem. I have never been one to question a doctor's opinion, but that day I did.
I asked her for a perinatologist to go to for a second opinion. We received the name of Dr. Anne Patterson. We called immediately for an appointment, and we were told the first available was...almost a month away.
I tried to be calm as I explained to the receptionist that I had just been told that my child might die any day--how could I wait that long!!!!!! Her name was Elizabeth, and I have nothing but the best to say about her. She listened, she spoke with the doctors, she got us in sooner.
I remember that my husband and I still had almost all our Christmas shopping to do. Here it was December 20th, we couldn't put it off.
I still remember the pain of running into a very pregnant friend of ours who had no idea the problems with our pregnancy, and putting up a cheerful front. I cried so much . My OB was wonderful. I remember him calling my husband to check on me that Christmas week.
Mid January, I had my first appointment with Dr. Patterson and Dr. Daniel Eller. They did an ultrasound and discovered that my child's bladder had once again become huge, and that there continued to be no amniotic fluid around him. My appointment was on a Friday morning I believe. After the ultrasound was completed, we all sat down and THEY GAVE US HOPE!
There was a new procedure being performed in other parts of the country. Dr. Eller, who had just joined the practice the week before, had witnessed the procedure and felt that it might be appropriate for us. The doctors carefully explained that there were still tremendous risks for our child and the good possibility that he could have medical problems or deformities. But they gave us something that we could do to help our child!!!
That morning, an amniocentesis was done again, and the fluid was withdrawn from our child's bladder, sent off for tests, and fluid was reinserted in the amniotic sac. We returned that afternoon for another ultrasound which revealed that our child's bladder had enlarged slightly again--but that was good. That meant that his kidneys were still functioning!!
We returned for more ultrasounds and amniocentesis almost every other day. Altogether, I probably had about 20 amniocentesis. The ultrasounds and tests indicated that the kidneys were functioning well.
Additionally, around this time is when we found out we were having a boy. Boys with this problem have a better chance than girls. If girls have this problem, usually there are significant anatomic problems involved also. Since the kidneys were functioning well, it was decided to take the next step in this procedure.
First let me explain that with no amniotic fluid, the baby cannot grow and develop properly. Second, with no amniotic fluid, the lungs cannot develop. The procedure involved placing a tube (called a shunt) in the baby's bladder that would drain out into the amniotic sac. This would bypass the blocked urethra which could be fixed after birth. ( Side not here--the urethra was blocked only by a small piece of tissue that had grown in the wrong place).
Amniocentesis are not comfortable procedures. This procedure turned out to be painful. Because it was a new procedure, I am sure that much still had to be learned about pain control. I can still remember the struggle I had with myself to remain still so that they could save my child as I lay there in tremendous pain.
The doctors tried for over an hour before they decided I could tolerate no more. We agreed to try again about a week later using better pain control for me.
It is now about mid February 1995. I remember calling Dr Patterson nearly hysterical. I was so afraid that my baby would die because I could not tolerate the pain and lay still. Also, I was concerned that my insurance would not continue paying for this new expensive procedure if we failed again because I could not stay stilll.
She calmed me and as I said, they came up with better pain control for me. The day came for them to attempt the procedure again. Things were different this time. They placed a catheter in me so my bladder would not get in the way as it did before, and they gave me demerol for the pain.
They attempted at least two times, and I can still remember the cheers and tears as Dr. Eller succeeded in placing the shunt in my son's bladder and draining it into the amniotic sac. WE DID IT!!!!!!!!
We continued to be monitored closely. We were advised it might have to be replaced if our son pulled it out. We were told he might have problems with club feet from having been so crowded for so long (no amniotic fluid to float in ).There were other potential problems, but they all seemed so minor. OUR SON WAS GOING TO LIVE!!!
Early in March, Drs. Eller and Patterson discovered that my son's kidneys had stopped working. Once again there was no amniotic fluid. His bladder was not huge. His kidneys were not producing urine. The kidneys had apparently sustained more damage than we had thought.
You see, when the bladder was getting huge, the urine was backing up into the kidneys, and the kidneys were becoming damaged. Well, early in March, they failed to work any more.
We still did not give up. My husband and I consulted a nephrologist and a urologist to discuss kidney transplants, dialysis, and other possibilites/problems. We continued to have thewonderful support of my OB who recognized I think that we needed to do all this even though our son's chances were incredibly slim.
The biggest problem we had and no doctor could fix this was that our son's lungs had not had enough time to develop. When he was born, we were told he would not be able to breathe on his own.
My husband and I considered the possibilities of long term ventilation and even short term ventilation with the possibility of taking him off life suppport if he had other serious medical problems besides needing dialysis and kidney transplants. We were so scared, and at the same time so willing to do whatever for our son.
Easter, April 16,1995. I cried out to God that morning that I would never get to enjoy Easter with my son. He and I would never go on an Easter egg hunt together. It was so unfair...And a small still voice in me said what better place to be than with Me in Heaven. At that point, I let go.
April 17, 1995 I got a nesting instinct and did a weeks worth of laundry that morning between contractions. I went to my OB. He put me on a monitor. The contractions had stopped by then.
I went on to work. Two hours later, I was in tears from the pain of these contractions. I kept telling my coworkers that they weren't contractions because I had just been to the doctor and he said I wasn't having contractions. I work across the street from the hospital where I would deliver.
My coworkers wouldn't let me go home. My doctor called me back and sent me on to the hospital. When I was checked, I had dilated 4 cm in about two hours.
Let me make this clear, that my son was still alive. Even though his kidneys had failed, he was still alive. We heard and saw his heartbeat all night long. We struggled with the idea that maybe I should have a c-section to lessen the stress on our son. We never gave up hope that there might still be some small chance for him.
A few minutes after 6 in the morning of April 18, my son Matthew Patterson McClure was born via a breech vaginal delivery. He weighed 4 pounds, 9.8 ounces. He had a heartbeat through delivery.
They say he even had blood flowing through him when checked by the Neonatal Intensive Care doctor, but my son could not breathe. I still struggle that to give birth to my son meant his short life was over.
Matthew Patterson McClure, your mommy loves and misses you.