Accreta Awareness Month: Jordan’s Story

“This month is Accreta Awareness Month. Many of you asked why my delivery was so traumatic. Well I’ll give you the summary of what happened during my pregnancy and delivery. At only 5 weeks pregnant, I went to the bathroom in the middle of the night to find blood when I wiped. I did spot with my other boys so I thought may be it was just the same situation. Well the blood became worst. So much in fact that I had to go to the emergency room. My husband stayed home with the children because I didn’t want them to worry. The next day I was at the OB and they told me after an ultrasound that I had what was known as a subchronic hematoma. I did not know what that meant. Basically had a 50-50 chance that I would lose the baby. It meant I had to be on pelvic rest and no lifting over 10lbs. By week 11, I was told the subchronic hematoma has decreased in size but the baby is still low lying. And to continue the pelvic rest and no lift over 10lbs. By week 14, my OB said the subchronic hematoma was completely revolved but the baby was still low lying. Meaning I had complete placenta previa. The worst kind, posterior and anterior. Which in itself is very dangerous to have during a pregnancy. Then after hearing that she said a word I never heard of … she said “accreta.” I heard her explain. She said it is when your placenta imbeds itself deep into your uterus and other surrounding organs such as the bladder and abdomen wall. She told me how if I do have it I’ll most likely need a caesarean hysterectomy in order for my own safety and the babies. All I could think is, I’m only 29. I shouldn’t have to hear a doctor tell me that I could have a hysterectomy. She made me an appointment with the MFM doctor. My 20 week scan came. I remember sitting in the waiting room. Feeling like I wasn’t going to get good news. Not about me but my son. I just had an off feeling. Then just like that, I was told his heart doesn’t look right. He doesn’t like how my sons heart looks. Then how his feet are what is known as clubfeet. He told me I definitely have complete placenta previa and most likely accreta. And then he asked the big question. “Jordan, do you want to continue this pregnancy?.” During this time is when that huge social media fight was going on about women aborting children late into pregnancies for this exact reason. Life threatening situations. I looked at the doctor. I told him “No, he’s a fighter. I want to continue.” I remember my husbands look. As tough as he is as a marine, I saw the boy he once was. Scared. I wanted to cry. But I needed to be strong. Well I remember leaving that appointment. Getting into my husbands truck, and just sobbing. Letting it all out. Then my husband held my hand. Said it’ll be okay. You won’t have accreta and our son will he okay. He’s a Riley and a Barber. He’s a spartan. We had a few fetal heart echos done to figure out our sons heart issue. He officially was diagnosed with double outlet right ventricle heart defect. And bilateral clubbed feet at the Children’s Hospital of Philadelphia (CHOP). I remember sitting there, the cardiologist team coming in. Telling how the first diagnosis we got from another hospital was wrong. It was worst. I don’t think I was breathing. The pain I felt. I was numb. I just listened. They explained all these surgeries that can happen. But CHOPs the best for this diagnosis. Then my anatomy scan was next after finding all that out. I was put into another room. The OB came in from CHOP. She said “I’m so sorry Jordan, you do have placenta accreta.” She almost started crying as well. The dangers of what I have is severe. It was scary. I was terrified. First words I said… “Shit, I knew it.” And then the water works. She told me I have to go next door to get another ultrasound done. I would delivery at the Hospital of the University of Pennsylvania also known as (HUP or UPenn). I was told reason for my accreta was most likely from having two previous c-sections. Many appointments later, I had my last appointment at 34 weeks and 5 days. It was a Thursday. I went in for a routine check up. And then my blood pressure was to high. They admitted me. Told me I had the beginnings of preeclampsia. Saturday came. I was ready to leave. I showered got my make up on. Put my regular clothes on, then the MFM doctor came and told me I wasn’t leaving until delivery. And I would deliver most likely Monday-Wednesday. We wouldn’t find out until Sunday. Which we did. Sunday night. I was told I would be delivering Monday morning. 11am. In the main OR. Where the blood bag supply room was. Since I will most likely hemorrhage. I was so upset. I had to see my kids via FaceTime. Which could have been the last time. I wanted to hold them. Kiss them. Tell them how much I love them. Monday morning came. I was in the bathroom when my husband opened the hospital room door to transport standing outside with a bed for me to go to pre-op. 6:50am. The surgery moved up in time. I was worried I wouldn’t see my mom in time. As they were taking me away I saw my mom. And my step dad. The relief on my moms face calmed me. I knew she loved me. She’s the strongest woman I knew. And I can honestly say she gave me the same strength. So my husband, mom and step dad were standing around me during pre-op and we were all laughs especially when they gave my husband a size too small scrubs. Then it was time. They wheeled me to the OR. My husband gave me a kiss and said he’ll see me soon. I was lucky to be awake during the c-section part. When my son was coming out they lowered the blue curtain and there was a clear curtain. Where I saw his first breath. How amazing that was. I had two other c sections with my other two sons. But I never saw them come out. Konnor had his own neonatologist team working on him. And transporting him to CHOP. Then the Oncologist (best in the country, who was going to be the one who would preform the hysterectomy ) came over. He said “Jordan, you do have accreta. You are going to be put under now.” And just like that. They put me under. I remember them waking me up in the OR. Telling me I was fine and they were bringing me to the ICU. And my husband is with our son over at CHOP. I got the ICU. I was so tired. But very calm. I remember them trying to wake me up. But like a child I wanted to be left alone to “sleep in”. At one point I did feel like if I died I would be okay. I felt so peaceful. Until I remembered my children. I forced my head to turn to my husband, my mother and my step dad. To talk to them. “Keep talking to them!” I screamed in my head. “Stay awake!!!!!”. And then my energy was coming back. Slowly but it was coming. The ICU nurse came in and told me I may need more blood transfusions. So, I guess I needed them. Found out I lost 5 liters of blood. (My entire blood supply) thank god they were able to be ready and prepared. Pumped new red blood cells from donors blood into me while recycling 2 liters of my own blood back in. I was told my accreta was on two sides of my uterus. There wasn’t anyway to save it. I would have died if they tried. Once I was stable again, I wanted to see my son. I wasn’t allowed until the next day. I told my husband just to stay with him. I was so determined to get discharged from the hospital. I started walking. Slowly. One foot in front of the other. On the floor of the hospital are quotes about a woman’s strength. I needed that. My son needed me. After losing 5 liters blood and having my uterus, cervix and Fallopian tubes removed (lucky my ovaries stayed) I needed to get to my son. But I couldn’t just be discharged. I had to be able to walk. And not just down the hall. I had to be able to pee on my own. Being transported to CHOP was very painful for me even in a wheel chair. Then Friday came and they finally discharged me. They were amazed that just Monday, I was fighting for my life. And by Friday I was healthy enough to leave. Konnor needed me. And of course as most of you know, Konnor didn’t have a name. For 2 days… almost 3 total days! When we finally settled on Konnor Frederick Riley, the nursing staff was thrilled! He was known as “baby boy Riley” at CHOP. When I finally got to see my son. I did skin to skin. He was so little. He was born 5lbs 10oz 17 inches long. But went down at his lowest at 4lbs 4oz. He had his first surgery at 10 days old. His 9th day. I couldn’t leave him. I slept in a wooden rocking chair. My body hurt. I was sore. But I couldn’t leave my son. I remember the way he looked after his surgery. I cried. My husband cried. The sounds he made. He was in pain. No child should ever deal with pain like this. I wanted to take his pain. Let me have it. Make him better. Nothing about any of this pregnancy or delivery and even now is normal. My baby has his big open heart surgery where they will stop his heart and put him on bypass to fix it. I cry every time I think about it. People say how strong I am. I’m not strong. I’m a Mother. Konnor is the one who is strong. He amazes me. Every single day. He truly is a fighter. I still haven’t processed the lost of my reproductive system. I feel if I let myself really think about it, I’m being selfish. My son is my priority and I can’t be able to be there for him and be upset about my own health. I do thank the amazing teams at HUP for saving my life. And CHOP for continually helping my son to be able to live a normal healthy life. I am lucky though. I have 3 of the most beautiful boys I have ever met. I am lucky to have them as my own. To be their mother. To know, that their mommy will do anything and everything to keep them safe. They are my world. And I would do it all over again.”

Thank you, Jordan, for sharing your story with us.

Please check out the National Accreta Foundation for more information.

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