Imperfectly Perfect

by Peggy LeDuc
12th May 1998

This is the story of my son, Brandon Matthew who lived with us for only four days, but has changed our lives forever. It is a story of faith, hope and love.

My husband and I found out I was once again pregnant the end of January 1997. We were both very excited. This was our second baby, yet fourth pregnancy. I had some spotting around 9 weeks. This gave us some concern since the previous pregnancy had ended at 10 1/2 weeks with an unexplainable miscarriage. I told the doctor of our concerns and somewhat hinted for an ultrasound. He agreed. We went and saw our baby for the first time at about 9-10 weeks. At this time everything looked fine.

The pregnancy continued without much concern until we went for our "routine" ultrasound at 19 weeks. The tech was having difficulty seeing the heart so we were moved into another room. A doctor came in to check things out. Because of the location of the baby and the placenta (anterior) we were asked to go for a walk, get something to eat, and come back. Upon coming back to the ultrasound dept., we were once again brought into the room with the new machine, which supposedly had better resolution. I lay there for almost an hour while the doctor performed the scan. I suggested my husband return to work, he was on his lunch hour. That's when we were told our baby had a heart defect. What kind was not yet determined, but there was something wrong with the heart. We were then led into a conference room and given the info that had so far been determined. It appeared as if our baby had an A-V canal defect (holes between the upper two and bottom two chambers). It was also suspected that our baby had agenesis of the corpus collosum (the connective tissue between the two hemispheres of the brain had not developed). Our baby was also measuring two weeks behind what it should have been. It was recommended that we go for an genetic counseling and have an amniocentesis done later in the afternoon. Our hearts were breaking. The doctor wanted to see me again the next week.

The next week we went for the next ultrasound to have everything confirmed. We were told our baby now had two things wrong with it and had a 50% chance of being severely mentally impaired. This doctor (ultrasound) continued by telling us we had a meeting the next day with specialist who could tell us more about our baby. She also informed us we would have to make a decision regarding the continuation of our pregnancy. She informed us in the state of Michigan I would need two letters to terminate my pregnancy and she was more than willing to write one and get someone else to write the other. We had given no indication that we were considering terminating this pregnancy--that is simply not an option for us.

We went to the meeting listening to all that was said. We took two family members who were both knowledgeable and supportive. The meeting concluded with me telling them I would not be terminating the pregnancy.

I went back to my doctor a few weeks later with a list of questions about the baby and where my care was going to be continued. He informed me I was going to be transferred to the high risk OB's. Two weeks later I was introduced to the doctor who God was using to answer all my prayers. My first visit with him began by him asking if I had any questions. Where to begin??? We discussed this that and something else including my being put on bedrest--the baby was measuring small (intrauterine growth retardation IUGR). I should have asked him when, but didn't think to. The following week I called him as he had requested, he wanted to discuss this with his partners. It was then I was put on bedrest at 24-25 weeks. He said it had something to do with an increase risk of having a stillborn. I didn't yet understand this, but began following doctors' orders--very hard to do with a 2 1/2 year old.

One week after being put on bedrest I had another ultrasound to continue to check the baby's heart and size. It was discovered that the amniotic fluid level had dropped. We had since started bringing my sister with us to the ultrasound appointments. She is an RN in a NICU. She new the amniotic fluid is in some part produced by the baby's urine output. She knew to ask about kidney function. It was while checking on the kidneys (there were two but beyond that nothing more could be seen) the doctor discovered my cervix had started to dilate. I was then admitted to the labor and delivery unit at 26 1/2 weeks. I was put on Magnesium Sulfate in an attempt not to deliver the baby. My doctor showed up at 6:30 AM to check on the baby's heart rate and contractions I had not been having. He came back at noon to discuss what he had been considering during the day. He was talking with the ped. cardiologist following our case and his partner who would be covering for the weekend. Our baby was still measuring small and it appeared as if he would need open heart surgery soon rather than later upon delivery. The catch was he wasn't big enough to have any surgery yet. It was decided that I would be transferred to University of Michigan's Women's Hospital. They are one of two hospitals in the state that do open heart on babies and I would be at the same facility.

It was while spending the fourth of July in Ann Arbor that I realized just how sick my baby was. He needed to be 2000 grams (4 1/2 pounds) for open heart surgery. He weighed 740 grams at this time--estimated through ultrasound. It was also here that we were told my baby had hypoplastic left heart and would need surgery very soon (within days) after delivery. It was also mentioned that the kidneys were not functioning properly. We decided that our baby had very little hope of ever coming home. I wasn't sure if he would even be born alive. I left the hospital not on medication to stop labor, but with a prayer on my heart. God I need this baby to be born alive. I need to see him, hold him, and tell him I love him. In my mind, if the baby was coming early it was because God was telling me he needed to be born to prevent being a stillborn. Because of our decision and our insurance my care was transferred back to the other high risk doctors.

I continued to be on bedrest and went for another ultrasound at 32 weeks. It was after this ultrasound my doctor once again had a meeting with the other doctors following our case (ped cardiologist, NICU doc). We had requested the ultrasound doc not be present--we had a bad taste from her. She was pushing us in a direction we didn't want to go. The ped geneticist was unable to make the meeting. After discussing the findings of the latest ultrasound and considering I was now 32 weeks, we were once again given three options for future care. My OB was ready to deliver the baby--that day!. The ped cardiologist thought it would be in the baby's best interest to wait and try to make it to term. The baby was estimated to weigh 900 grams, but still needed to be 2000 grams for surgery. He would grow best inside of me, but would most likely still only be 1300-1500 grams at term. If we chose not to deliver, it was suggested we start having non-stress test done twice a week on outpatient basis. Thirdly, we could have done nothing, increasing my chance of having a stillborn. I still didn't think this baby was coming home, but more than anything I wanted him to be alive.

I began having non-stress test the next day. My doctor believed the first time I had this done, he would be delivering my baby. He made sure I was very much aware of this before he sent me over to have it done. I prayed on my way over, "God if you want this baby born, we don't pass the test. If it's not time for him to come, we pass the test." We passed that test three times!

On Tuesday, August 19, 1997 I woke up to a beautiful day. The sky was so blue and there were big puffy white clouds. I opened the blinds in the nursery, turned around, rubbed my belly saying, "Brandon if you want to come today, it's okay with me." Later that afternoon I went for still one more non-stress test. This one we did not pass. Brandon Matthew was born at 6:31 PM, weighing 2 pounds 5 1/2 ounces (just over 1000 grams) measuring 13 3/4 inches. I heard the faintest of noises from the other side of the operating room. Is that my baby crying over there? The doctor leaned over to remind me he would most likely be put on a vent and I would not hear him cry. I remembered, but still that was him crying--or at least trying to cry!! My heart soared. I was so excited--he was alive. It was soon there after the nurse and neonatologist brought him over for me to see. I will never forget his bright blue eyes jumping out at me. He was beautiful! As they took him to the NICU I called out, "Brandon, Mama loves you!" Right there in the operating room my prayers were being answered.

Later that night I visited him for the first time. He looked perfect. It amazes me still how perfect on the outside Brandon was, yet had so many things wrong on the inside. He was so small I had to call him my "Big Guy".

The next two days the neo doc came to discuss Brandon's condition with us. The hypoplastic left heart and agencies of the corpus collosum were confirmed. A problem with the kidneys was also confirmed--cystic dysplastic kidneys. Brandon's kidneys were not functioning, yet we needed to know how much they would function. They began running test to determine this. It was after one of these discussions I took my parents and sister down to the NICU to see Brandon. It was then I was asked one of the few easy questions about Brandon's well being I was ever asked. "Do you want to hold your baby?" I went from tears of sadness to flying higher than the clouds. I floated around the nursery until they placed my son in my arms. I don't think I've ever been happier.

On Saturday (the first sunny day since his birth), test confirmed Brandon's kidneys were not functioning. He had begun to show signs of heart failure. The beginning of the end had started. Throughout my pregnancy I prayed for my unborn child. God kept him in His hands and delivered him to me on Tuesday. It was now time to give him back. Brandon died on Saturday, August 23, 1997 at 9:00 PM in my arms, my final prayer was answered. We were not alone, but surrounded by many family members who loved him very much. Brandon was sent to heaven with a mission. Brandon needed to tell Jesus his mama says thank you for answering all of her prayers and find my other two babies and tell them I love them too. I kissed Brandon good bye that night around 10:00PM for the last time. I realized that was no longer my baby, my baby was already in heaven with Jesus. God gave me four days with my son, four days which have forever changed my life.

Thank you for taking time to read my lengthy story. I would like to close with a song that I discovered on the internet while looking up hypoplastic left heart. We used this during our son's memorial and I have continued to play it when I need some time with Brandon.

"Visitor From Heaven" -- Twila Paris

A visitor from heaven
If only for a while
A gift of love to be returned
We think of you and smile

A visitor from heaven
Accompanied by grace
Reminding of a better love
and a better place

With aching hearts and empty arms
We send you with a name
It hurts so much to let you go
But we're so glad you came

A visitor from heaven if only for a day
We thank Him for the time He gave
and now it's time to say
We trust you to the Father's love
and to His tender care
Held in the everlasting arms
and we're so glad you're there
We're so glad you're there

With breaking hearts and open hands
We send you with a name
It hurts so much to let you go
But, we're so glad you came
We're so glad you came