Disclaimer: This story contains graphic details of postpartum health complications which may be upsetting to some.
“Almost 10 years ago now, we were blissful in a postpartum room. Our family had come to visit their new baby brother. They were dying to go to the nursery to see him and my husband and I were so proud to show them. I stood up to walk them to the baby and a splash hit the floor. DARK RED BLOOD. We all gasped. I went into mom mode. ‘Kai, Eliot, go out in the hall with Gigi and Tammy and look at all of the cool stuff.’ We shuffled them past as fast as we could; only my oldest saw a glimpse of what happened. We heard a nurse answer her concerned question by telling them I had knocked over a cup of juice.
We called in a nurse. She assessed the amount of blood and agreed it was more than they wanted but hoped it just pooled from me sitting. She did some vigorous uterine massage and said I could go to the nursery if I remained in the wheelchair. Philip rolled me there and I proudly introduced my girls to their brother Gannon. Our first son. We were all so proud. As everyone gushed over the baby, I could feel myself pouring blood. I knew something was wrong, but there wasn’t a chance I was ruining this day for my children. We went back to the room, and I knew I needed the nurse. I was thinking of excuses to get the family out and my husband to leave the room. You see, this was his biggest fear. He has had an irrational fear of me hemorrhaging after birth since before our first child was even born. Each pregnancy and labor he agonized over it. Each birth I was fine, and I assured him he had no reason to worry.
I asked Phil to take everyone back to see the baby. I called in a nurse and explained what was happening. She said it was too much blood; something was wrong. Of course, I was scolded for not telling anyone sooner. She called for a doctor; they were measuring heaps and heaps of blood-soaked cloths. Philip walked in and went white. I begged him to leave, but he wouldn’t. I begged the nurse, ‘He’s scared, please stop, you’re scaring him!’ She said, ‘Honey, this is about you right now.’ I looked at the doctor, pleading with my eyes. ‘I’m fine.’ I told her. ‘They’re scaring him.’ She took one look at the blood everywhere, nurses running around with blood-soaked towels and calling out measurements with their eyes wide. She said, ‘Please do that in the bathroom, there’s no need for him to see that.’
I was so grateful. I fought like hell. She called for an OR. I was not okay. ‘Don’t take my uterus, please don’t.’ She said they needed to stop the bleeding immediately, I had already lost too much. She told me they needed to scrape my uterus. ‘What meds will I get before?’ She looked at me with honest eyes and said, ‘We usually give morphine, but I’m sorry, there’s no time.’ No sooner than she said this, she began. It was the single most painful thing I’ve ever experienced. The whole time I felt my body crawling up the bed and away from her. I kept saying, ‘I’m sorry, I’m trying to hold still.’ She withdrew her arm, blood up to her elbow. I began to vomit from the pain, but it worked. I didn’t need to go to the OR, and she saved my life. My husband recounts the day our son was born as the worst day of his life, but we were safe. Mama and baby. I happily cuddled my son while receiving my blood transfusion and all was right in my world.
Fast forward about 2 years later, I decided there would be no sleeping until I took a pregnancy test. I was still breastfeeding my perfect two-year-old son, but my period was always on time. ALWAYS! It’s insane the emotions you go through during those three minutes. Your whole life is about to be different. Then, my timer went off. I walked over and 2 BOLD DARK LINES. There was no denying it. I got a shiver down my spine. I’m always thrilled for a positive test. This was no exception. I’m having a new baby!!! Through all my excitement, I remembered the delivery of my son. My husband was going to be terrified. Suddenly, I began shaking. I was scared to tell him; I knew the second he learned about this baby he would think he was about to lose his wife. I didn’t say anything; I just shoved the test in his sleeping face. He said, ‘See babe, nothing to worry about.’ I muttered, ‘It’s positive!’ He did his best to honor the fact our excitement, but over the next few days his anxieties started to join the conversation.
A few weeks later, we attended our first ultrasound, and there were 2 sacs!!!! Twins???? Unfortunately, only one little baby with a heartbeat. Phil later shared he had been terrified. With my history of pre-term labor, he didn’t think I could survive twins. For the next few weeks my pregnancy progressed normally. Around 12 weeks, I started to get short of breath. I didn’t think much of it; I remembered around this time with Gannon’s pregnancy my asthma started to flare up, so I figured it was happening again. Then one day, I was home alone while Philip and my mom took the kids to buy shoes for school. I was feverishly cleaning and talking to my friend on the phone. I became a bit short of breath and joked to her, ‘Wow, this is sad, I’m only 12 weeks pregnant and I’m already so out of breath.’ I sat down on the edge of one of the kids’ toy boxes to catch my breath. I came to on the floor of their bedroom. Had I fainted? What happened? I called Phil and said, ‘Honey, I think I fainted.’ He and my mom both told me to call an ambulance.
At the hospital, l I was almost dismissed as a typical pregnancy fainting episode, just as I suspected, but the doctor was thorough. She noticed my D-Dimer was off and insisted on a CT scan. While waiting for the results of the test, a tech came in and asked if I was ready to go. I said, ‘Definitely, are my results back in yet?’ He said, ‘They’re still in the process of reading them, but I believe they looked good.’ I was so excited to get home to the kids. The doctor came in and said, ‘Has anyone talked to you yet?’ I excitedly said, ‘Yep.’ She continued, ‘Okay, you have a blood clot in each lung.’ I stared at her blankly, then chuckled, ‘Oh, you’re joking.’ The doctor spoke, ‘Umm sorry, I would never joke about something like that.’ I protested, ‘No, the other tech came in and said my scans looked clear.’ ‘I’m sorry, but you have a blood clot in each lung. You’re not going anywhere. We need to start you on blood thinners right away.’
My baby? What would happen to my baby? She saw the terror on my face. ‘Don’t worry, we treat pregnant women with blood clots all of the time. These shots will not hurt your baby, your baby should be just fine.’ I was so relieved, but Philip looked less so. When we were alone, I asked him what was wrong. He looked at me sadder than I’ve ever seen him and said, ‘Why do you keep doing this, why do you keep trying to leave me? I love you.’ My poor husband, faced again with the mortality of his wife. Now I’m a hemorrhage risk on blood thinners; he had every right to be terrified. The rest of my pregnancy was a blur of high-risk maternal fetal medicine appointments and 360 shots in my belly (on in the morning and one in the evening). But you know what, it was uneventful. Asher grew wonderfully. Asher was a miracle in every sense of the word, beating the odds time and time again.
I may have terrible pregnancies, but my labors and deliveries are very smooth. Asher’s labor was no different. My husband wanted me to get to experience cutting the cord since he had done the other three (and Asher was our last baby), so I did. I’m so very glad I did. Asher was here and she was perfect. My doctor didn’t want to take any chances of something going wrong, so I was given all of the precautionary meds. She got my uterus clamped down as fast as she could and started the Pitocin drip. I wasn’t bleeding on her watch.
I spent a few blissful hours with Asher. She nursed well. They finally took her off to the nursery for her tests and procedures. As veteran parents, we didn’t feel the need to follow them. We got some much-needed rest and Philip relaxed, finally feeling like I was safe. As the hours started to pass, I started to think it was strange the baby hadn’t come back yet. A doctor I hadn’t met before came in. He said Asher hadn’t passed her meconium yet and she had been vomiting. Her belly was distended, and it was causing her breathing to be labored. They were admitting her to the NICU. What? NO! Not this baby. This baby was full term; she was fine. All my other babies threatened to be born early, we were used to the idea they might go to the NICU, but not this baby.
Asher would spend 6 days in the NICU. I believe she passed meconium on day 3, but she kept vomiting and was having trouble feeding. I thought I would be the NICU mom that spent all of my time downstairs with my baby, but honestly, I wasn’t. I hated seeing her that way. I went once or twice a day for 30 minutes; otherwise, I sat in my room, staring at the wall and wishing I was home with my other kids. I loved Asher with my whole heart, but I just hated what was happening. My body failed my baby, and now she was sick and suffering, all because of me. We stayed at the hospital one additional day with Asher, but then it was time to go. Leaving your baby behind at the hospital is heart-wrenching. I was so glad to see my other children and got plenty of love and snuggles, but then I found myself retired to my room. Pumping milk for Asher. I hated the pump. I should be snuggling and nursing my baby. I wasn’t allowed to breastfeed her in the hospital because they needed to measure what she was getting. I was certain she would never nurse now that she had learned the bottle.
Day 6 came. They had no answers for me; this would become the story of our lives. They did all the tests and imaging and found nothing. Asher ate well enough to be discharged, but still not perfectly. I jumped in the car and went to get her. She came home and nursed like a champ. It was like all her issues melted away. She didn’t nurse for very long, but she made up with it for frequency. We did notice her loud and raspy breathing. She was diagnosed with laryngomalacia that was exacerbated by her reflux. I’d never had a baby with reflux, so there was much to learn.
As Asher grew, she was much like my other children. She had food allergies and asthma. She threw up more often than my other kids, but other than this she seemed happy and healthy. At about 1 year, she was still breastfeeding, but we were ready to try some solids with her. She loved food and honestly was quite a chunky baby. She happily chewed the foods, but she wouldn’t swallow them. She tried her best, but she couldn’t. After a few weeks of this, I took her to the doctor. They ran swallow studies and she passed with flying colors, a gastric emptying scan she passed, next an endoscopy to see if she had an allergic disorder (Eosinophilic Esophagitis, also known as EOE) and she passed. I was assured it was just run of the mill reflux and Asher could benefit from feeding therapy. We joined the waiting list. A year passed and nothing. Asher still couldn’t swallow solids. She lived off breastmilk, applesauce, and smoothies. I was told maybe if I stopped nursing her, she would eat. I was angry and I said, ‘If she stops nursing, she will die; she doesn’t eat anything else.’
Another year and I told her GI doctor we really needed help. He agreed and ordered another endoscopy, but this time with a BRAVO test to measure the amount of reflux that was happening. After all, she was on reflux meds and nothing was getting better. Do you know what the test showed? No reflux, but it was positive for EOE. Go figure. We had to make a complete about face. Change her diet, add in an elemental formula, and insist upon getting her into feeding therapy. Finally progress. Even with these changes, Asher would go 10 months without gaining any weight. Doctors kept telling me as long as she wasn’t losing weight, she was fine, but I was growing into trusting my mama instincts and I knew they were wrong. I continued to push. Her feeding therapist and I were certain she was having a slow emptying problem.
I asked the doctor for another gastric emptying scan; he did not want to, and he made it known. ‘She had a normal scan a year ago, these things do not change quickly.’ I let him know this was a request made by her feeding therapist. ‘Fine. I’ll order the test, but when it comes up normal, I WILL NOT do it again.’ He would call me days later and diagnose my daughter with gastroparesis (slow gastric emptying). He was unapologetic. Our relationship was severed from this point. When medication did not treat Asher’s gastroparesis, I asked about the option of a feeding tube. I was told it was unnecessary at the time. However, at this time we sought a second opinion from specialists at Cincinnati Children’s Hospital (CCHMC). They had the leading EOE clinic at the time and we were so fortunate to get in with them. They agreed while a tube might be a good idea for Asher, there was more that could be tried first. Eventually, Asher did end up with a tube, but we gave it a good try before resorting to that.
Asher went on to gain 4 pounds in the first few days on the tube and 7 pounds total before the first two weeks was up. She was coming alive before our eyes. She was nourished and she had energy. The more she was able to run around and play, the more she started complaining about severe leg pains. She would curl up screaming and crying in pain. At first, we wondered if it was growing pains. She had so many new nutrients, maybe she was having a growth spurt, but it continued. Her pediatrician sent us to ortho. They didn’t see anything obvious in x-rays and ordered an MRI. Everything appeared normal. In the meantime, her GI doctor seemed uninterested in hearing about her other symptoms.
The final straw came one day when Asher was vomiting. I sent an email to her GI doctor’s patient portal per our home nurse’s advice. He asked us to come in for an appointment. I thought this was strange considering it didn’t seem like it was appointment worthy, but we followed through. When we came in, we were taken to a consultation room instead of an exam room. He said, ‘What do you think is wrong with Asher?’ I said, ‘Well nothing, she threw up but just once. I was surprised when you asked us to come in.’ He set into me. ‘You need to stop doing this. You message me more than any other patient in my 15 years. You always have questions or need supplies. You need to stop; do you understand me?’ Our nurse’s mouth fell open. She was in shock, but I was not surprised – I knew exactly what was happening. I had a friend who had already walked this exact path.
I knew exactly the steps I needed to take to protect myself and my daughter. ‘I’m sorry. You’re right, I do message you a lot. It’s my first time with these symptoms and I want to make sure I do everything correctly.’ We left with him thinking he had put me in my place and I would cooperate from now on. I left, knowing we were done, but it needed to go perfectly. I needed a plan. Upon telling my husband what happened, he was furious. He scheduled an immediate consultation with the doctor. The doctor must have expected this appointment would go south because he asked a social worker to attend the appointment. Our nurse went with him so the doctor couldn’t lie about what was said. Then he spoke the words that would echo in all our ears for years to come: ‘Your wife looks really suspicious for Munchausen’s by proxy.’
My nurse quickly started damage control, letting him know this was not proper protocol for such an accusation. He changed what he said. ‘Well, I just mean it looks that way and we would hate for anyone to get the wrong idea, we want to protect her.’ My husband cut in, ‘Well, if you wanted to protect her, why didn’t you share this information WITH her?’ Our nurse said, ‘You didn’t mention any of this yesterday.’ He went on to say my constant questions made him feel like he wasn’t doing his job as a physician. The trouble was his words spread like a virus. He had reached out to other doctors to ‘warn’ them about me, which is why we had been facing so many doors closed in our faces. He had reached out to our nursing agency, which had prevented me from getting a nurse. It wasn’t until my nurse went back to her agency and told them, ‘No, this isn’t right; she isn’t making it up, this little girl is sick’ that they came around.
They asked if we would consider continuing seeing him, but how could we? Here’s the catch – if I didn’t like what a doctor said to me and then started to see someone new, it’s considered ‘doctor shopping’ and I’d be proving his point. Luckily, we already had CCHMC onboard, so I wasn’t shopping, I was just transferring care. It took a lot of coordinating with social workers I trusted and other doctors, but we transferred all her GI care away from Virginia. I later learned he had a pattern of doing this to mothers. It’s very dangerous, but it’s unfortunately a very real reality for mothers of chronically ill children.
Once we transferred care to CCHMC, medical appointments were much less stressful and doors started to open. We were referred to other specialists within the hospital who could help Asher with her constellation of symptoms (mystery leg pain, inability to walk long distances, debilitating stomach pain, fainting spells). At this point we had also visited a geneticist at Children’s National (Washington, DC) who had let us know they believed Asher’s global diagnosis was a Mitochondrial Disease. This opened us up to the world of genetic testing. Getting set up with her current team: Genetics, EGID, Neuromuscular, and Pain Management (just to name a few) have gotten Asher into so much better of a position than she has ever been in before. It’s the first time I feel like she’s really thriving. There are certainly still struggles and still a lot of unanswered questions, but we have a much better grasp on her day to day.
Right now, we are in a sweet spot. Asher’s pain is much more well-managed. We just completed service dog training and will have some help detecting when things are awry in Asher’s body. Gatsby was trained as a medical alert dog. He was trained to detect the change in Asher’s smell when a pain flare is coming on. This is in hopes that we can treat them sooner before it gets too intense. I can’t wait to see what comes out of their new partnership. I hope if parents get anything out of this article, it’s to trust your gut. Always. I hope doctor’s reading this will hear me when I say please listen to parents. Please, please listen to parents when they tell you their babies are hurting. We are just regular people – we aren’t doctors, we aren’t specialists – but we’re experts on our kids. More than anything, I don’t want kids to have to continue to struggle because a doctor thinks a parent is dramatic.”
This story was submitted to Love What Matters by Kei of Central Virginia. You can follow their journey on Instagram here and here and their blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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