‘Scars equal strength’: Mom empowers toddler daughter to embrace her ‘BRAVE SCAR’ after open heart surgery

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“Sarah’s story starts years ago, long before she was born. March 12, 2012, I ended up in the operating room with a ruptured appendix. It had probably been ruptured for about 12 days. I was sick, very sick. Skilled surgeons worked over 4 hours cleaning out and repairing everything in my lower abdomen. At some point in the weeks that followed we were told my Fallopian tubes received massive damage. Conceiving naturally was out of the question. We had longed for children. My husband had just returned from a 7 month deployment overseas and we were planning on starting a family in the next few months. That dream and hope was gone now.

While we were beyond grateful I was alive, we were also crushed. I spent the better part of 12 weeks recovering from two major surgeries. Surgeries that left me with multiple scars. My abdomen looked like a tic tax toe board. The worst scar was an 8-inch-thick line starting at my navel and going down. After I healed, it took at least four months before I would take my shirt off for my husband. This is a man who held my hand through everything. He would pick me up and put me in the bathtub for 2 months straight because I was too weak to step in by myself. He would patiently bathe me every night, taking extreme care to keep my stomach dry. He was so kind, so gentle, so loving, so giving and I couldn’t take my shirt off in front of him. I was so ashamed of the scar. What was wrong with me?! He reassured me. He loved me, and loved me well, through it. I knew the problem with the scar was in my head. I knew it was all me. He didn’t mind.

Finally I saw a quote on Pinterest (I mean who doesn’t love Pinterest?!) It said, ‘Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you.’ I took that on as my motto. I used the meme as my screen for my phone. I reminded myself daily, and I came to embrace my scar. It is a visual battle sign of what we faced and conquered. It’s part of me, part of us, part of our story. I love my scar now.

Gretchen Steketee

We’ve been so very blessed. We did two rounds of IVF and ended up with 3 beautiful babies. We had our son in 2014 and then 21 months later we welcomed beautiful twin girls.

Gretchen Steketee

I was being followed closely because it was a multiple birth. By the end of the pregnancy I was having weekly ultrasounds. At my 35-week checkup I was told Sarah was head down, engaged and ready to come. The doctors felt as close to certain as possible the girls would be born that week. They told me there was no room for them to move. Vaginal birth was possible. I was so excited. I hadn’t wanted a C-section, I didn’t want yet another scar. At the 36-week appointment Sarah had flipped and was completely breech. I was so, so disappointed. She would stay in the feet-first position until she was delivered via C-section. Of course, we don’t know for sure, but I believe labor and a vaginal birth would have placed too much strain on her heart. I think that flip saved her life. I don’t think she could have survived the birthing process. Again, a minor detail, that had huge ramifications. Thank the Lord, she flipped!

The girls were born in week 37, considered full term for twins, but Sarah was having breathing difficulties and spent ten days in the NICU. That, I realize, is a small amount of NICU time, but it was honestly the hardest week of my life. I had a newborn at home needing her mommy and one in the hospital, also needing her mommy. The staff joked with us that we won the prize for most time by parents spent in the NICU. I was determined not to leave her alone there. She needed to know her mommy and daddy. Every single time I had to lay her down in her bassinet and walk away, it honestly ripped out a piece of my soul. Not my heart, my soul. I sobbed every single time. I lost my breath every single time. That is is the hardest thing I’ve ever had to do.

Gretchen Steketee

The staff was wonderful, they loved her so well, but I just couldn’t get over the fact that if loving her was my job, she should be with me. I knew it was what she needed, it was what was safest and best for her, but still, I cried and cried and cried every time I had to leave. Looking back on it, we now know why she was having difficulty and I truly believe it prepared me for what was to come. Sarah’s Congenital Hearth Disease wasn’t detected that week. And I’m grateful. I feel like it saved her from unnecessary surgeries and procedures.

Sarah spent the next 18 months thriving and growing. She struggled to meet some gross motor milestones and she worked hard in physical therapy to achieve them. She learned perseverance and determination from an early age. Again, preparing her for what was coming.

My husband is active duty military. In the winter of 2016, right around the girls’ first birthday, we started talking about our next move. We had big plans. He interviewed and received a position that would keep us in the D.C. area. We were thrilled. We started making plans, looking at new houses, finding preschools, thinking about me picking up more hours at work. It was wonderful news! But, then, within a few days, plans changed. So, we made new plans. Let’s go to Hawaii! It’ll be fun! When else will we get a chance to live in paradise? We were told, ‘Getting you to Hawaii should be no problem.’ We got excited again, started making plans. And then two weeks later we were told, ‘Nope, no job for you in Hawaii. How about California?’ My thought was, ‘Um, how about NO.’ But, like in most cases, that was not a question as much as it was a ‘Congrats! You have a new job.’ So, we wrapped our brains around it. We were excited. This would be good. It’ll all work out.

We were in a less than ideal rental situation in D.C. so we made plans for the kids and I to move home with my parents, in Georgia, in May when our lease was up. Hubby would stay in D.C. and finish out his tour and meet up with us in Georgia in July before heading west as a family. We had one more thing to finish up before we left D.C. — the girls’ 18 month well baby checks. The movers had come early so I called to reschedule the girls’ appointments. We weren’t able to see our regular pediatrician, so I said we’d see whoever was available.

We got an appointment with one of the senior members of the team. She listened to Sarah for a very long time. Then sat back and said, ‘Has anyone ever mentioned a heart murmur?’ What?! I don’t have time for this. She must just be hearing things! I knew appointments take time to be scheduled. Everything is always slow going, unless it’s a priority. Then things can happen as soon as you want. The pediatrician looked at me and said, ‘Let’s get an echo before the end of the week.’ My heart started racing. You can’t get echo appointments that quickly, can you? I had to explain that we were literally leaving for Georgia the next morning and wouldn’t be around to get an echo later that week. The doctor was very hesitant in saying it would be OK for Sarah to wait the nine weeks until San Diego to be seen. My sweet mom was at the appointment with us and spoke up saying she was confident a family friend would be willing to see her in Georgia and help facilitate any testing necessary there. The doctor strongly encouraged us to do that. We left the appointment wondering what that had all been about. That doctor, the one we weren’t supposed to see, was the first out of at least 10 (I mean, think NICU, ear infection after ear infection after ear infection and even an ER visit for eating glass (which is a great, but entirely separate, story) to hear her murmur. We are grateful we saw her that day.

Gretchen Steketee

We got to Georgia and saw our friend there (coincidentally, my husband’s pediatrician from way back when) who set us up with a cardiology appointment at the Children’s Hospital. The day before the cardiology appointment I realized I never received a confirmation call, so I called them. I spoke to at least four people. All saying, ‘Sarah’s appointment was scheduled but it was in four weeks.’ So, we didn’t go. The pediatrician in Georgia called me at my parent’s house to see how the heart appointment went. When I told him what happened he said he would fix it. I told him he didn’t need to, but he insisted.

I received a phone call the next morning and had her cardiology appointment rescheduled for later in the week. We were to see another doctor than originally hoped for, but it was where they could squeeze us in. My mom and I took her that morning, my dad stayed home with brother and sissy, and hubby was still at work in D.C. She had an echo, the ultrasound of her heart. The echo tech, was amazing! He was gentle and kind and patient and very thorough. When he went to consult with another tech during the echo I knew something was wrong. Nothing could have prepared us. I was thinking it would just be a form of aortic stenosis, nothing major, something we would watch as she grew. So, when the doctor sat down and said, ‘There’s no easy way to say this,’ I kind of just blanked out. I heard something about multiple left sided defects, something about a parachute valve, something about severe mitral stenosis; but honestly, I didn’t get much from it. He mentioned presenting her as a case study at his groups next meeting in order to come up with a plan as a team. The plan would most definitely involve a cardiac catheterization procedure to gain a better look.

I re-explained our timeline to him and he said he’d get back to me within the week. I went home a bit shell shocked. At that point we had been an active duty military family for 13 years, and I had been a nurse for over 14 years, with the majority of my time spent in emergency rooms. I have had the privilege of working with some of the most outstanding nurses and providers up and down the east coast. So, of course I took to Facebook, to find out if anyone had any knowledge of the Children’s Hospital in San Diego. Fortunately, I had multiple friends who had worked at the Children’s Hospital and every single one of them came back with the same name of the best cardiologist. However, they all followed with ‘he’s the department head and there’s no way you’ll be able to get in to see him.’ I also have a friend at NIH who started doing some research for me. She also came back with the same name. I knew this was who Sarah needed to see, I just wasn’t sure how we would make it happen.

Well, the Georgia cardiologist called back and had his recommendations and then followed with, ‘I did my residency with a doctor that’s now in San Diego. He’s an excellent physician and the head of the department. I’ve contacted him already and he is very willing to see you and take Sarah on as his patient.’ Blessings upon blessings! The cardiologist we weren’t supposed to see was able to get us into the doctor we needed to see in San Diego! Thank you Lord!

One month later we were settling into our new home in Southern California. We made the trip down to the hospital for Sarah’s follow up appointment. She received another echo and we met her doctor. After examining Sarah, he looked at us and said he didn’t know whether to believe the echo results or not, perhaps we were seeing a lot of artifact from movement. She was full of energy and life and seems to have no struggles. Based on her echo results we should be seeing some sort of slowing down or struggle from her. But that just wasn’t the case.

Gretchen Steketee

The next step was the cardiac cath, we would proceed with that in 4-6 weeks, then we would have a clear picture of what was going on. We scheduled the cath, my parents (whom we’ve dubbed our crisis response team) flew out, and early one September morning we headed for San Diego. We did all the pre-op check in procedures and were convinced we would be headed home later that day. We carried our baby to the cath lab, laid her on the table and were able to stay with her until she fell asleep. There were many tears leaving the cath lab, but we knew she was in the best hands possible. If we had known that would have been the last time we saw her eyes for 5 days and the agony of the impending fight for life, this momma wouldn’t have been able to leave her.

Gretchen Steketee

We headed out to the courtyard and attempted to pass the time as quickly as possible. The plan was to hear when they were done and then be reunited with her in the Post-op area about an hour after the procedure was complete. The nurse from the cath lab was going to call us and let us know she was done. We were thinking it would be three to four hours. Right around the three hour mark my phone rang. I was relieved they were done and answered excitedly. We had a poor connection and the call dropped. She called right back, and what she said took my breath away. I literally stopped breathing, my heart fell, I knew what it meant. She said, ‘Sarah is ok now, but she will not be going to PACU. She is headed straight to the CVICU and the doctor will meet you there.’ I knew what that meant, that was terrifying news. I knew our baby was sick, fighting for her life sick. I started shaking. I felt nauseated. I looked at my husband and he attempted to reassure me. I had to look at him and take his hand and tell him that this was bad, very bad news. He needed to brace himself.

We made our way to the CVICU and waited. We sat in a windowsill and just waited. It was the longest thirty minutes. Finally, her doctor came through and told us to follow him and we’d find somewhere to talk. He was completely surprised by what he found. Sarah’s heart was far from healthy. She was so sick open heart surgery was the only option. They were leaving her intubated overnight and trying to give her at least 24 hours to stabilize before she went into the OR. Our beautiful ‘Baby Red’ had severe stenosis, a dysfunctional mitral valve, pulmonary hypertension, pulmonary edema and her pressures in her heart were absolutely astronomically high. She had been struggling and fighting for every single heart beat but was compensating so well that we had no idea. The next 18 hours were the longest of our lives. We sat and watched her helplessly. I stayed right by her side, I held her hand and pleaded with God that this would not be the last time I held it.

Gretchen Steketee

I cried, a lot. Our nurses were phenomenal. They were extremely talented, they knew exactly what was going on, they knew what to watch for, they watched our Sarah like a hawk. They advocated for her, they loved on her. They also watched out for me, they took care of me, they offered support and a shoulder for me to cry on. They loved us well. Those nurses knew their jobs, and did them beyond well. We are eternally grateful for them. They are heroes!

Sarah went for open heart surgery the next afternoon. It went well, as well as possible. She came out of surgery with a brand new mitral valve. When we saw her after surgery we both looked at each other in amazement, she was a shade of pink we had never seen. Our beautiful red-haired, blue eyed baby was pink! Her heart was functioning properly, and her body was getting blood flow it didn’t know possible. We just always assumed her paleness was her natural coloring, but it was her lack of ability to pass oxygen through her body. It was such a sense of relief to see her after surgery.

Gretchen Steketee

After surgery her fight was still going. Again, we had fantastic nurses and staff. I was grateful for my nursing background. I could listen and follow along and understand with no problem. What a blessing. The first time I even thought about her scarring was when her surgeon mentioned he tried to keep them minimal because she was a girl. Um, what? Please don’t worry about that! You just literally, saved her life! Please don’t apologize for putting a scar on her. And then it hit me, maybe my scar and struggle was simply to give me the tools to help and guide my daughter through the same trials and difficulties. She is beautiful, with and without the scars.

Gretchen Steketee

I knew that night I didn’t want her to struggle with her scar like I did. So we started referring to it as her ‘brave scar.’ We don’t want her to feel ashamed. We prepared her siblings that Sarah now had a brave scar. When she woke up and started seeing it and touching it we smiled and emphasized how brave and beautiful she is!

Gretchen Steketee

She loves showing it off from time to time. We want our other two children to just see it as a cool mark that she has because she’s a brave fighter. I want them to know differences and marks on others are ok, it’s just life. It means they have a good story. Most marks and scars equal strength and bravery.

Lauren Lewis Photography

All of my kids, but especially Sarah, come up to me and ask to see ‘Mommy’s brave scar.’ I never hesitate to show them. I’ll lift my shirt and let them look and touch and smile and then run off and carry on with life. My oldest will occasionally ask for the story. He is at the age when everything is interesting. We tell him and answer any questions.

Gretchen Steketee

I’ll hear him ask Sarah to ‘see her brave scar.’ She almost always shows him, but occasionally she won’t and that’s ok. He knows it’s her decision to show or not.

Lauren Lewis Photography

They all three love big and live large. These babies never cease to amaze me. We know we will face surgery again in the next five years. We know Sarah faces multiple surgeries and procedures in her lifetime, but we are grateful she has the opportunity to face them. We are eternally grateful for all the doctors we saw in a short four month span who were diligent and thorough and cared. We are grateful for all the little, and not so little, coincidences and happenings that have led us to where we need to be. We know that God’s hand is on our girl. He has a plan and because of that plan, Sarah has a future. Divine intervention clearly seen.”

Lauren Lewis Photography

This story was submitted to Love What Matters by Gretchen Steketee, 36, of San Diego. Submit your story here, and subscribe to our best love stories here.

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