Brennan’s Heart Story

Told by his mother Julie.

Diagnosis: Transposition of the Great Arteries (TGA)
At: 30 weeks

September 2007

When we got pregnant with Brennan we were an average family for the most part. We had two adorable boys ages 3 and 10 (the older from my first marriage). This was my third pregnancy and I finally felt relaxed like I had the confidence in my inner parenting wisdom. I knew that with this child I would be more relaxed; after all, I had two boys. Also, my first child was born with a neurological disorder and a brain tumor so we had already had our share of the drama. . .or so we thought.

At 29 weeks I went for the routine ultrasound certain I was having another boy-we even had an ice cream bet going with the kids. Everything looked great-it was a BOY-yeah but he was turned in a way that all the cardiac views could not be seen. We were told we could come back in a week to try again or not-it was up to us.

God must have intervened in that decision because for some reason we decided to go back. After the exam I left the room to use the ladies room and my husband watched in horror as the ultrasound doc took out a book titled fetal anomalies. When I returned he said he saw some shadowing but could not make out with any clarity one of the cardiac views. He just explained again about a shadow and wanted us to receive a fetal echo but assured us that 90% of the time it is nothing. I had the sinking feeling then that we were in the other 10%-call it mothers intuition!

We were seen two days later by a wonderful Dr with the Cleveland Clinic who explained what we were looking for, a condition called TGA. My husband and I had expected that was it after much online research over the past 48 hours. He said he would scan for a bit and then stop to talk either way. Well he scanned and scanned and I knew-I felt like I was going to jump out of my skin. Then I would look over at our little 3-yr-old sitting playfully in the darkened room and remember that my children are everything. When he stopped and looked into my eyes I knew. My mind raced back to finding out about my older child’s illness and I took strength in knowing he had beaten many odds. The rest is a blur-its like smacking head on into a brick wall-your in so much pain but numb. Everything-EVERYTHING has changed in that second. My husband remained strong but with tears welling in his eyes-our little boy was sick-very sick. Dr. Lorber explained this condition TGA and that open hear t surgery would be needed within the first week of life. He also warned that there could be other heart issues-coronary, etc that may not be visible until the baby was born. He referred us to “our surgeon”. I say “our” because whoever took our baby into that OR had all of our lives in his hand.
I cried for days-it is a blur. I canceled the shower that was supposed to be for myself and my best friend who was also expecting a little boy 6 weeks before me. I asked constantly why us-I did everything right and others don’t and they get healthy babies. A close friend told me those that are given these special angels for a reason-they need parents like us. I thought God was crazy-I couldn’t do this-I would lose it wouldn’t I?

When we met our CCF surgeon I assumed he would be cold and precise-very little emotion. But my husband and I agreed it didn’t matter as long as he was the BEST! I was going to give my baby the only gift I could, the best fighting chance. I remember feeling like I was going to pass out or vomit before he walked in and then… he was there. He was kind-no really- and compassionate and beyond experienced. He explained it all! The plan, be prepared-a induced vaginal birth-I was stunned but he assured us it would be safe. Then our baby would be given a procedure to assist in the mixing of the oxygenated blood with the unoxygenated blood through a catheritization surgery (the day he was born). OK scary enough but then the big surgery- 8 hours for simple TGA performed in the first week of life-dependent of course upon babies response to the first procedure and prostaglandin. When we left the office we were given a tour of the floor-PICU and step down. We saw our first heart baby that day-his parents allowed us to peer int their world (their babies room in the PICU) the lines, the beeping and machines keeping their baby alive). My fear became a reality to me that day-it was going to be us-prepare yourself-hold on tight I thought.

The weeks that followed of dr appts, echos, and waiting were long. I decided to go ahead with the shower and after soul searching we put the nursery together. We decided we were not going to give up on our baby for any reason. It was hard and so lonely at times because unless you have watched your baby in a PICU crib with the uncertain future you can’t understand. Now I realize it was OK to feel angry-why us, to feel frustrated at those who said the wrong things because these emotions were part of the moment! Let yourself feel it all.

We educated ourselves-we read a book called “Walk on Water” about Dr. Meed that was written about the doctors at the Cleveland Clinic. When I read the first chapter I thought about never opening the book again-it was my future-my child with TGA in the OR. Then I decided I would read it because maybe it would help-I learned and it did help. I also reached out to another mother of a TGA baby via Carepages, she answered questions and offered support. She told me things only a parent of one of these special guys could know! I owe her so much!

I was constantly nervous, excited to see Brennan-that is what we named our miracle. I was angry because I noticed people tried to ignore or not bring up the pregnancy like it was negative-now I know they were just trying to help.

The day came for Brennan’s induction but in true throw us for a loop fashion he had gone breach. Time for my first C section-complete panic! I shook like a leaf in the OR as the prepared me for the spinal then we had some trouble with low BP. They got that fixed and all I could think was please God protect him-guide the drs decisions. I was so afraid-then he was out-no cry -no cry. Then I heard him-sweet cry. Tears were streaming done my face-where was he-so many people were in the OR. Then I saw my Brennan-he was blue but breathing-I kissed him-not knowing if I would every hold him-so soft-I said I love you-god will protect you and he was gone-whisked away.

When Bren was four days old he had his TGA surgery and surgery on his coronaries. It was a very tough surgery-the first time ever they saw this type of coronaries with TGA (see he likes to throw everyone for a loop). I call this day our dark day-12 hours they had my baby in the OR-12 hours of darkness for us-12 hours of hourly updates. Then the news the surgery was finished!

April 2009

Our surgeon met me downstairs-he looked exhausted and admitted to a difficult surgery-those coronaries. When I thanked him he replied there was more than him in the OR that day-he remarked of his concern after turning off the heart lung machine-but said he was shocked at the rate at which Bren’s heart had pinked up and started to beat on its own. The next 72 hours were critical because the stitches would be so fragile. If they failed then there was little that could be done. We were relieved and fearful. More uncertainty-but that is life with a CHD kid-revel in it. I now look back thankful that I have been able to appreciate my children even more because of what Bren has taught me. That is right you will learn more from this baby that you are about to make this journey with then you can imagine. They will change you for the better-let them-allow yourself to feel it all, without explanation. Don’t let anyone tell you what you should feel because they are not you!

Oh and Brennan Anthony he is a healthy little almost 2 year old-he runs, wrestles his brothers, and melts my heart with every second (even when he is mischievous). It was all worth it! Know that you are not alone, we are all with you-the other heart families-we are all praying with you!

~God Bless, Bren’s Mom, July 2009