Sarah Fehr is our DOZ Show Preferred Guest for this issue of DOZ Magazine. Sarah is a teacher, a writer, an author, and a wife and mother. She is the author of the book, Heart Scar, which she wrote following her son’s battle for his life. About eight years ago, her son was born with a heart condition called Transposition of the Great Arteries. Shortly after his birth, he underwent a 16-hour surgery. During the procedure, his heart stopped beating, and the surgeon had to reach in and manually pump the heart to get it working again. Three years later, Sarah wrote the book, Heart Scar, detailing her son’s experience. In this interview, which is an excerpt from DOZ Show Episode 54, Sarah shares with us her journey through what was no doubt the darkest moment of her life when she didn’t know if her baby would live or die. She shares her story to give hope to mothers everywhere facing a similar predicament.
Be inspired to find purpose even amid your battles!
Sarah, shortly after your son, Trace was born, he had a challenge with his breathing which led to him having heart surgery during which his heart stopped working and had to be manually pumped by the surgeon. Will you please share with us that experience?
Yes. It was probably one of the most difficult experiences of my life in that the trauma that was involved. First of all, to give you a little bit of background, his heart defect is called transposition of the great arteries. So, the pulmonary artery and the aorta that go in and out of the heart were switched. So the blood normally goes out to the body and then comes back to be re-oxygenated and then sent back out again but that blood wasn’t getting back to the heart, and then the blood that was being oxygenated just continued to loop through and never got carried out to the body. So, they were doing the opposites of what they were supposed to be doing. And he also had what they call a ventricular septal defect, a hole between the bottom chambers of his heart. And that actually was a good thing at the beginning because it allowed some of that blood to mix so that he did get some of the re-oxygenated blood. So in a way that was kind of a blessing in disguise. But what they had to do then for the surgery, was to switch those two arteries; cut them, switch them, and also to put a patch in for the ventricular septal defect. So it was supposed to take about eight to nine hours, and we were at the children’s hospital, Illinois. They did a really good job keeping us updated on what was going on; they would have someone come and kind of report how things were going. And it was going very well for most of the time. And then about the time that we were thinking it would be winding up, some of the reports started to be like, well, the surgeon is a little bit concerned about some things, he wants to keep Trace in the OR, he’s not ready to bring him out to the PICU yet because there are a few things he wants to watch. Of course, he didn’t give us specifics, so we didn’t know exactly what was going on, but it ended up being like sixteen hours of surgery and was about two or three in the morning by the time the surgeon came up and talked to us. So he told us that he had made the repairs; the switch and then the patch. He had gone ahead and closed Trace’s chest, sewed it back up and then he got this kind of sense that something wasn’t quite right. He didn’t really give us the specifics but for one, he was an excellent surgeon and two, I believe the Spirit of God nudged him to because what happened next was that he opened the chest back up because he was not comfortable with what was going on; he wanted to open again so that he could see if he needed to do anything else. And then not long after that, Trace’s heart did actually stop, and because the chest was open, the surgeon could just literally revive and get the heart pumping again. Now, had he been closed up and already back at the PICU, we, I think probably, would have lost him. Because they wouldn’t have been able to get back in as quickly, so it was really a miracle that he came through and that God chose for us to keep him. So it was quite a journey, and it’s interesting to think that there’s a reason that he’s here today because that was a miracle that he made it through.
While you were pregnant, was there any clue, any sign that your baby would have this sort of health challenge at birth?
No. There was not. I had a regular pregnancy; I had sonograms at the normal times that you have them. Everything measured fine, everything was always fine, so there was no indication at all beforehand, and once we got to the children’s hospital Illinois and were talking with the cardiologist, we asked him, is this something that should have been caught and wasn’t? Is it usually caught? And he said that in these cases, the transposition of the great arteries, about half the time it is caught in the sonograms beforehand, but half the time it’s not. This was of course about eight years ago; I don’t know if it would have been different if it was present day or not. But I think part of the difficulty is the baby’s position can make it hard to see things and who’s reading the sonogram, how much experience they have. So, I think different factors play into whether or not they catch it. And with transposition, he wasn’t missing a part of his heart it was just they were switched, so I think it’s a little more difficult to detect.
Many women go through postnatal depression even when their babies are fine; your baby had to fight for his life from day one. As a mother and as a first-time mother, how did that impact you? Did you fall into post-natal depression? Did you feel like it was your fault? Did you blame yourself?
Thankfully I have a wonderful family and support system; good friends, good church family, and I had quite a few people that I felt like I could always reach out to. My mum and dad at that point in time lived just fifteen or twenty minutes away from us, so she came over a lot, and my husband’s family also came to visit. So I kind of always felt there was someone I could bounce things off of. But it was this kind of burning question, like okay I don’t even know how normally things go with babies, and now I’ve got this child that I need to be aware of if something abnormal is happening. But it was definitely stressful for me, but he did have quite a few appointments and check-ups, both with the cardiologist and paediatrician, so I did feel that I had people I could call if I had questions.
Okay. So, a good support network was in place, but how did his condition impact on your very new marriage?
It was interesting how it worked. My husband and I were both very overwhelmed with all the information, trying to grasp what was going on, we ran home to get some clothes, and then someone drove us over to the children’s hospital, and yes, we were staying with my sister who was not too far away. They had a room in the basement that we were using. It was really stressful on both of us, but I believe that it also really brought us together in a way that trials sometimes do. They kind of strip away the mundane things of life that maybe used to bother you or are annoying, you know those things just kind of slip away because you’re both united in this one goal of your child getting better. I want to say that, that’s one of the best times of our marriage as far as our closeness with each other so it’s interesting how the hard times can really bring you together as a couple. Once we got home, then it was a little more stressful because I was trying to take care of the baby and he would be at work, and it was a little harder to connect just like with any new baby and that time it was a little more difficult, after we got home and things returned to normal. But all in all, again family-friends support was wonderful in that way.
Earlier on, you did mention being a bit fearful and wondering if you would lose your son. So, when it came to taking care of him on a day to day basis, how did you deal with this fear? How did you overcome the fear?
Well, until probably the last week or two that he was in the hospital, there was always kind of the possibility that something could go wrong, and we could lose him. After the initial surgery, like I said it took till about four o clock the next morning, we went back to my sister’s house and just crashed and slept for a few hours. And then I got a call from my mum that you might want to come back because apparently one of the stitches was ripped apart and so he was bleeding again, and they had to go back in and repair that. And it’s just like along the way it’d be great for a while, and then something would come along that’d be a problem and very much a rollercoaster ride. And again, I think it was just the prayers of those who were praying for us that carried us along because looking back, I think to myself, how did we do that? Live day to day, not knowing if our baby was going to make it? But we just did, and I really believe the spirit and the prayers of many people carried us through that time.
So, what was most challenging for you during that season of your life and what was most rewarding?
Well, hands down, the hardest part of that situation was waiting and not knowing. And I think this is probably true for most human beings, but I don’t just like not knowing what to expect and where things are going. Hanging in the balance makes me very nervous and uncomfortable, and for a long time, that’s kind of where we were. Because as he was in the hospital, there was these ups and downs so you never quite knew how things were going to be that day and you never quite knew how it would turn out until quite a bit down the road when he did seem to be doing well. But it was just the waiting and not knowing that was really difficult for me. And in some ways, I used to think – you know this sounds kind of strange – but if he was going to die I kind of just wanted it to happen. Just so that at least I would know where to go from here instead of being in this uncertainty. And I know it seems kind of strange because obviously, I did not want him to die, but it was just like I just want to know what’s going to happen and get on the other side. So that was definitely the hardest part for me. The most rewarding part was bringing him home. When he was in the hospital, especially at the beginning, in the first couple of weeks, I rarely was able to hold him because of the tubes and lines he had all over his body that made it difficult. And also they didn’t want to disturb him too much so I did not get to hold him very much and I guess maybe that would be another one of the difficult times, that I just couldn’t hold my new baby. So, when we brought him home, I just thought to myself, I’m going to hold him as much as I want to, whenever I want to. And it just felt so good to be able to just simply hold him.
I like that you shared that because that’s something that a lot of mothers take for granted; being able to hold their babies. So, what is the biggest lesson that you took away from that season of adversity?
I think the lesson I took away was trials are not necessarily a bad thing. Even when bad things are happening, trials themselves can be so strengthening. And the Bible talks about that over and over that your faith grows as you go through difficult times. And nobody wants to go through these difficult times; I didn’t want to have this happen. But it just really forced me to have to trust in God. And there was really absolutely nothing that I could do to change anything at that point. And while that was very hard, it was also a good lesson just to remember that we all are in God’s hands all the time even though a lot of times we think we have control and maybe we do have some. But it was just kind of stripped away from me, all those thoughts of, I can do this, and just made me realise, I’m helpless, I’m in God’s hands, the baby is in God’s hands, that’s just where we have to be to trust Him. Another thing that I learnt that was really somewhat surprising to me, and it shouldn’t have been, but how much my family and friends came through, and my church family came through. We received cards, notes, well wishes financial contributions, it was very humbling to be the recipient of all those well-wishes and prayers, it was a wonderful thing but something you don’t wish to have to experience but when you do, you’re thankful for all those that are supporting you.
So, Sarah, in what ways are you using your victory to help other mothers whose children may be going through a similar challenge?
Well, there’s always this kinship, this brotherhood or sisterhood, I feel like, between parents who have had children in medical situations whether it be heart defect or some other problem that they’ve been hospitalised. Because it’s one of those things that you can’t quite understand until you have been in that situation, what it’s like to look down at your baby and see him with ten different tubes, lines, he’s completely quiet, eyes closed just breathing and in a ventilator- he was on a ventilator for quite some time. So looking down at your child like that, it’s heart-breaking and so I always feel a kind of kinship with others who’ve been in similar situations. And I have met a few people at church, and friends of friends, who have had a similar experience, so I really tried to encourage them as people did me, with cards or financial support or just sharing what our experience was, and just kind of comparing notes you know, what they went through. So I do have a heart for other parents who are in the situation.
