Ebony’s Story: Severe Preeclampsia, HELLP, Micro Preemie, and Trauma Turned Advocacy

Ebony’s Story: Severe Preeclampsia, HELLP, Micro Preemie, and Trauma Turned Advocacy

by | Nov 28, 2021 | Uncategorized

My name is Ebony Ford, and at 26 weeks pregnant, I was diagnosed with severe preeclampsia & HELLP syndrome. 

Reigning Over It

After 5 years of infertility & 3 losses, my husband & I were elated to find out that we were pregnant again in October of 2017. My pregnancy was uneventful but due to my history, I needed to see a high-risk obstetrician. At 25 weeks, I developed a bit of swelling in my feet and made a note to tell my doctor at my appt. But I arrived at the appointment to find that my doctor had an emergency and I would be seeing a partner. My blood pressure seemed fine so the doctor told me not to worry and to go on the trip we had planned that week. Despite my doctor’s orders, he decided that I didn’t need to do my usual lab work due to the results always being normal. A few days later, my husband & I traveled to Las Vegas and I felt great. But on my second day there I began to experience severe swelling in my extremities, shortness of breath, and lightheadedness. I reached out to my doctor and she advised that I return home immediately and report to Labor & Delivery. I boarded the plane and fell asleep. I woke up as we were landing and realized that my vision was gray, my feet no longer fit into my shoes and I had a very hard time catching my breath. I was wheeled from the plane to the pickup lane and we proceeded to the hospital.

Reigning Through It

When I arrived at Labor & Delivery, I was told that since I wasn’t in labor and my concerns weren’t necessarily “pregnancy-related” that I should go to the emergency room. After 15 minutes, and not having my vitals taken, I was eventually wheeled to the triage area in the ER. The triage nurse put the blood pressure cuff on my arm and when it was done reading her eyes got wide as she asked to put the cuff on my other arm and the machine read 246/154. She explained, while pressing a button on the wall, that she was calling a brain attack (stroke protocols) and things would go really fast from here. And she wasn’t kidding! Staff ran out almost immediately, lifted me onto a gurney and rushed me into the back. Almost immediately the doctors told me they were sure I had preeclampsia or a blood clot in my lung but would wait for my results to come back. Within 30 minutes the doctors told me that they found a ton of protein in my urine indicating preeclampsia and my chest x-ray showed severe pulmonary edema which explained my being out of breath. A doctor from Labor & Delivery came down to explain to me that because I was diagnosed with preeclampsia, they could keep me pregnant until 32 weeks but I would have to stay in the hospital until delivery. I wasn’t thrilled about that but I knew it was what was best for my baby. My husband began to make calls to share with our family what was happening when doctors came back in sharing that they just received my outstanding lab work which indicated that I was in complete kidney and liver failure. They then shared that I had something called HELLP Syndrome and would need to deliver IMMEDIATELY! I began to cry and panic as they worked to get an additional IV in order to push magnesium and additional blood pressure medications. My pregnancy had been totally uneventful up to that point, so to suddenly hear the words, “We have to deliver your baby right now via c-section” was completely unreal to me. How could I have to deliver my baby at just 26 weeks? What would a 26-week-old baby look like? WOULD SHE SURVIVE? These were all the questions that flooded my mind as they rushed me up to labor and delivery.

As my husband called our parents and those closest repeatedly sharing the awful news that we were about to deliver, a neonatal intensive care unit (NICU) doctor appeared and started sharing what we could expect from a baby born at 26 weeks. There was so much chaos in the room as the team of doctors, nurses, respiratory techs and more were preparing me for the c-section so I only remember hearing certain key phrases like respiratory failure, intubation, blindness, cerebral palsy, hearing loss, feeding difficulty and probable brain bleeds all describing what could affect my unborn baby. Before I could ask any questions, the monitors started going off indicating that my blood pressure and heart rate were elevating. One of the nurses put an oxygen mask on my face, encouraged me to take deep breaths and kept telling me to relax. The NICU doctor promised to come talk to me after the c-section and let me know how my baby was doing. While processing all of this, another team of doctors from the ICU came to talk to me about my condition. Because my health was rapidly deteriorating, they felt it was best to put me under general anesthesia for the c-section and then intubate me to allow my lungs to rest. They said that if my lungs and kidneys didn’t respond to delivery ad treatment that I may need to go on life support. But they were sure that wouldn’t be the case. A few moments later I was whisked away to the OR. I remember thinking the entire way to the OR that I may not survive this. It was a feeling of impending doom that I had never experienced and haven’t since. I remember praying aloud (and not caring who heard me) and asking God to please not make my husband a widower and a single father in the same day. And as they lifted me onto the table, I was asked to lay flat and I panicked because I felt like I was drowning. I began to hyperventilate and kept saying “I can’t breathe! I can’t breathe like this!” That was the very last thing I remember…

And She Shall Reign

On March 25, 2018 at 6:53 pm I gave birth to my dream, my fighter, my heartbeat, Reign Victoria. She came into the world crying and alert weighing 1lb 15 oz. And while she was stabilized to be transported to the NICU, doctors attempted to reduce sedation and take me off of the vent. But my condition deteriorated and a chest x-ray showed worsening pulmonary edema. I was given a dialysis port in the OR and then taken to the ICU where I spent the next 26 hours on life support, undergoing dialysis, magnesium transfusions, and was typed for a liver transplant due to my elevating liver enzymes. Simultaneously my daughter experienced a collapsed lung requiring a chest tube and a transfer to the ventilator. After 26 hours my condition began to improve and the sedation was lifted. My blood pressure continued to spike but I was able to be transferred to Labor & Delivery and shortly after meet my daughter for the first time. Though in a lot of pain, feverish from the magnesium and seeing spots, I was determined to sit with my baby girl as long as possible. And for the next 79 days, as she battled jaundice, severe anemia, lung collapses, and bronchopulmonary dysplasia, I faced readmissions for blood pressure, kidney and liver issues. And though she was released home seemingly healthy on day 80, I continued to battle the effects of my traumatic birth mentally, emotionally, and especially physically.

In the months and years to come, prematurity reared its head and dealt us some devastating blows in the form of 4 bouts of RSV, Croup, Bronchopulmonary Dysplasia, hypoxia, severe expressive speech delay, global developmental delays, and pulmonary fibromatosis requiring 3 rounds of radiation and an impending surgery. Our journey birthed a passion for advocacy so I have dedicated my life to mentoring NICU parents and those who are medically fragile. I founded a non-profit organization and diversity inclusion firm called Miracle Mamas that provides guidance to hospitals & organizations seeking to make an impact in the maternal health crisis, provide mentoring and resources to individuals impacted by prematurity, birth injuries, disabilities, and traumatic births to ensure that their physical, developmental, social and emotional needs are exceeded. We host weekly support gatherings on the Clubhouse app for mothers of premature, medically fragile, and disabled children. We are currently hosting a fundraiser to take self-care bags to NICU families as well as dinner to the NICU staff on Thanksgiving Day. Please consider donating to help us make a greater impact by clicking here (hyperlink: https://www.paypal.com/pools/c/8EiqFZiBiV )

Author Bio:

Ebony Ford is a 34-year-old Washington DC native. She is the proud wife of Ryan Vincent Ford, musician and gospel recording artist, and mother to her pride and joy, her daughter Reign Victoria. Ebony received her Bachelor’s Degree in Psychology and Certificate in Pastoral Counseling from Liberty University and is currently pursuing her Master’s degree in Forensic Psychology. She hopes that her education and personal experience will allow her to open her own practice and specialize in near-death experiences, more specifically birth trauma. Her traumatic, near-death birth story and her daughter’s NICU journey birthed a passion for advocacy and mentoring. In February 2021, Ebony founded Miracle Mamas, a support group for mothers of the premature, medically fragile, and disabled that meets on Clubhouse and hosts monthly gatherings. In August of 2021, Ebony founded Miracle Mamas LLC, a diversity and inclusion firm that provides consultations to organizations looking to aid in the maternal health crisis and provides resources to families of the premature, medically fragile, and disabled to ensure that their physical, socio-economic and emotional needs are met. Both Ebony and her daughter also serve as Ambassadors for March of Dimes and find great joy in sharing their story and serving the population most affected by prematurity. They most recently contributed to March of Dimes’ national campaign “It’s Not Fine” and appear in both the commercials, digital ads on various websites and social media as well as the print ads in multiple magazines.

Sarah’s Story: Birth Trauma x2, Preterm Birth, Postpartum Preeclampsia, and Stroke

by | Nov 14, 2021 | Uncategorized

First Pregnancy

Throughout my first pregnancy I was the model patient for my provider, overweight yes, but otherwise without complication, until of course I wasn’t. To this day I wish I had realized what labor and pre-term labor was and I wonder IF only I had gone in sooner.

Food Poisoning?

It all started on a Sunday, July 15, 2018, while my husband worked on the room that would be the nursery. He still had 10 weeks before it needed to be done, although I’d hoped we would be further along in the process- there were still no walls. I had been plagued by nausea and terrible swelling the whole pregnancy, started wearing my husbands shoes at 10 weeks, so when I was nauseous and had a sore back I didn’t think anything of it. I spent the day napping and coloring in bed. My husband got me up for a bike ride with promise of ice cream. Thankfully he ended up with a blister when we were only a quarter of the way into our 12 mile bike ride and we turned back. Getting off my bike I felt a stab of pain in my belly but it went away as quickly as it came so I brushed it off and we drove to go get our custard. I didn’t really stop to think about my discomfort until we were going to bed around 10pm. I tossed and turned for about an hour before deciding it must be our mattress causing my discomfort, back pain. We moved to the other bed and I continued to toss and turn until I felt cramping like I had food poisoning and was going to puke or poop my brains out, which I did for the next two hours pacing through hall between events. Finally at 2 am the pain was unbearable and I had noticed that I lost my mucus plug during my multiple trips to the bathroom (not that I knew what that was at the time) so we called the on-call OB who agreed with my assessment that it didn’t sound like labor but to come in to get checked.

We’re having a baby!

We arrived at 2:30am. We were brought up to the L&D triage room to be assessed. The OB was pretty sure I had a kidney stone or bladder infection. They set me up on the monitors, found baby’s heartbeat but had difficulty keeping him on the monitor because he was low. Meanwhile, no contractions were registering and I was in constant pain, not waves. The OB asked to check for pre-term labor “a simple swab test, just to be safe” but he quickly decided that was not what needed to happen and was frankly a bit flustered. After a quick back and forth with the nurse he said “nope I’m just going to measure her” to which I jumped in with “ we already know the baby is measuring big and my mom was fully effaced and 3 cm dilated the last two months with me, so I wouldn’t be surprised if I’m partially dilated”. He looked up and said to me “no you’re fully dilated”. It was 2:55am.

The next thing I knew the tiny triage room was stormed by every L&D nurse free at the time to start IVs, get magnesium and antibiotics (no one checked my allergies), steroid injections, etc. in as fast as possible. All while the doctor looked at me and repeated “Don’t push!”. The NICU nurse arrived quickly with the isolate, but nothing was set up because no one had warned the NICU until they discovered I was fully dilated. Meanwhile, I was made to lay down something I hadn’t done since midnight and that’s when I finally felt the contractions right on top of each other but in distinct waves and the whole while I keep hearing the doctor say “don’t push” to me and “are you ready yet?” to the NICU team. There was a lot of conversation back and forth as the doctor still couldn’t tell when I was having contractions but I focused on not doing the one thing my body so wanted me to do, push.

Finally at 3:45 the NICU team was ready and introduced themselves, the RT was my sister-in-law’s mom Susan, so I said “Hi Susan! It’s Sarah” because that’s the polite thing to do right? With permission to push I did and it was in no way relieving. My water broke mid push and showered the doctor and the triage room floor to ceiling such that the curtain was dripping when we were alone after the delivery. After 3 contractions at 4am we found out we had a son, we hadn’t know the sex before that. I saw part of him for 10 seconds and only really remember the Dr. commenting “easily a 14-pound baby at term” (I still feel guilty for the minor blessings of not delivering such a large boy at term) before he was whisked away and just as quickly as everyone had arrived they were gone. Those, what were likely only minutes, felt like hours as my husband and I sat in shock that we had a son and worrying that he may not survive. I don’t remember this but the worst part for my husband was when the Neonatologist walked in saying “I’m sorry…” something about how it took longer for him to come talk to us than he wanted. 

About 3 hours after he was born I finally got to see my son. He was small and covered in tubes and wires, on a ventilator. Everyone complemented me on how well I handled it all, but then I’m usually the rock and the strong one for everyone else so that’s what came naturally to me. While inside I screamed every time someone congratulated me, I couldn’t understand why we were celebrating my failure and his tentative hold on the world.

First Time Meeting Micah

NICU Stay

We had a relatively short NICU stay, 40 days, but leaving the hospital after 3 days and still never having held him was soul-crushing. Having to induce lactation (I never was very successful), feeling guilty and pressured to provide the only thing he could have initially, and navigating the postpartum period I never learned about because we didn’t get to go to our class and I hadn’t gotten that far in my pregnancy book, was so hard. Seeing him intubated, hearing he had an infection, hearing he had a brain bleed, was frightening, but worse was seeing other babies and feeling guilty that he was doing better than some, while jealous of other moms who got to hold or feed their babies or even go home with them. I’m still sorry for the thoughts I had about the full term mom whose son was large, I was so mad at how she panicked when the alarms were going off because her son was mad and hungry and she wasn’t on time to feed him, meanwhile she was bookended by a mom with a kid on a ventilator and a mom with a kid on an oscillator who knew which alarms to pay attention to by that point. Regardless, even a short NICU stay is traumatic and I know how awful it is to be in a room on the L&D floor hearing other moms with their babies – I’m so sorry to that mom and others, like the pregnant woman in the hall or the friend who didn’t have a NICU baby. I don’t wish my experience on anyone but I did at the time and do wish it never happened to me.

I spent approximately 12 to 16 hours a day (6 am to 10 pm) in the NICU with mine and 5 other babies in our little bay. There were a few nurses in the NICU who supported me and cared not just for the babies in their care but the parents too. One (Craig, dad to 3 NICU grads himself) even pulled my husband aside and told him to keep me away from the NICU even if only for an hour. He saw the writing on the wall that I was headed for a major breakdown.

Coming Home

Coming home was also difficult; not going back to work and staying home 24/7 because he was medically fragile, losing the support of people who had become family during our stay. All the appointments, we had home nurse visits, weight checks, ROP appointments, and more. I even had a county health nurse shame me for not breastfeeding him, meanwhile, I was lucky to produce enough milk for one of his 10 bottles a day. It was overwhelming and lonely. Most people thought that once he was home everything was fine and he was a normal baby. I felt so alone. It took me until he was nearly 6 months old before I started to put the pieces back together and bond with him in a way that was not just focused around fear. Even now, I wonder if I hadn’t been made to feel like the pain was in my head or that I wasn’t really sick in the past, I might have gone to the doctor sooner. But, then I think that if I’d gone sooner they probably would have sent me home and missed the pre-term labor anyway.

Today he is happy and healthy even with lingering respiratory issues and, like any 3 year old, refuses to sleep. Even so, he is and always will be my Mighty Micah.

Second Pregnancy 

Following my experience with Micah I was nervous to have another child because we had no (and still don’t) explanation for why he arrived 10 weeks early.

As an aside, I’ve found writing my story with Ezra more difficult, maybe because it’s fresher, or maybe because it wasn’t his life but my own that was on the line.

We found out we were expecting again when Micah was about one and a half (Thanksgiving 2019). This time I was determined to know as much as I could about what to expect in terms of complications and how we were going to try and get me to term. I never considered that complications might arise during my postpartum period.

I had ultrasounds at 8 and 9 weeks and then every other week from 12 to 24 weeks then weekly starting at 28 weeks. I took weekly progesterone to make my uterus “a happy home” from 16 through 36 weeks. I was at a higher risk (20%) for preeclampsia due to my white coat syndrome (is it surprising that I have anxiety with/around doctors/medicine?) so I had to monitor my BP 2x a day and take baby aspirin. My first appointment with the MFM I had a BP of 120/100 and he nearly put me on BP meds then and there.

COVID

When March 2020 came along I was at 20 weeks and stressed by the constantly changing protocols and not knowing how care would continue if I were to get COVID or just be symptomatic. My appointments couldn’t just go virtual and I was worried that any change in my care plan would result in a second preterm birth.

Because of COVID and the new protocols, I ended up going 25 weeks never seeing my own OB (who did by chance get to deliver Ezra) and not knowing who I would see until I arrived at my appointments. The OB I saw at 21 weeks decided I didn’t need to see an OB until 28 weeks when I would have my glucose challenge, but I was already seeing the MFM doctor at 22, and 24 weeks so I didn’t worry too much about it.

Gestational Diabetes 

At 28 weeks I ended up failing the 1 hour challenge and subsequent 3 hr test. I was officially diagnosed with GDM (increasing my risk for preeclampsia among other things). The next 10 weeks I worked to control my blood glucose with diet and exercise. I had to walk for an hour after every meal to have an acceptable blood glucose while on a low carb high protein diet, hungry ALL the time especially for brownies and ice cream. Regardless, I ended up needing insulin over night and it seemed like every week the dose was increased. Nothing I did made a difference. It was hard when the only thing I could try to control was uncontrollable.

Once I reached viability I started to break down the rest of my pregnancy into little goals to be pregnant just one hour more than I was with my first. Then to reach 32 weeks pregnant and avoid our hospital’s “small baby protocol”. Followed by making it to 35 weeks and avoiding automatic NICU admission at our hospital. Then term at 37 and then to hit 40, something I’d originally thought would be impossible.

Induction: Labor & Delivery

Because of my risk for preeclampsia and the diabetes it was recommended I be induced at 39 weeks. We gave our son every opportunity to come before his eviction date but he wasn’t interested in leaving on his own so I was scheduled to be induced at 39 weeks 5 days. When I was admitted I was 3 cm dilated and he was at -3 station. Induction was delayed a bit so I could get some insulin: I ate before arriving at the hospital since I knew I wouldn’t be eating after.

Even on Pitocin (started at 9am) and with my water artificially broken (at 11am) labor felt like nothing or maybe a period, but my blood pressure and blood sugar were all over the place throughout labor. While I didn’t have to have magnesium they did put seizure pads on the bed rails just to be safe. Around 2 pm I went through transition (food poisoning feeling again for me). And by 4 pm after 3 contractions I delivered Ezra. I got to hold him and neither of us had any complications other than high bili, due to being Coombs positive, for Ezra. It was an answer to prayer that I could hold him after birth, room in with him, and go home with him. The stress of COVID, not knowing if I would suddenly go into labor, and controlling my GDM paled in comparison to getting what I so desired for my time in the hospital.

Postpartum Preeclampsia & Stroke

You’d think my story ends there with a relatively un-traumatic pregnancy, labor, and delivery; however, the discharge instructions are actually important when you go home from the hospital.

Five days postpartum (3 days at home) as I was making breakfast and going up stairs to change Ezra’s diaper I lost vision in my right eye. I’m used to ocular migraines and thought that I must just be having a severe one, because again I’ve been trained to write off every symptom as insignificant or in my head. I went outside to pick some tomatoes and while bent down lost feeling in my right hand and right half of my face. I panicked a bit but didn’t want to do anything about it. Meanwhile, my husband checked for other stroke symptoms and I didn’t have any. I decided to take my blood pressure just because, and it’s was 160/90. High but I wrote it off as me being anxious about the loss of vision and feeling. I still sent an email to my doctor because my husband was worried.

The doctor called later that afternoon and asked me to check my BP, it was 200/90 and 180/90 (I double checked because I didn’t believe the first reading). I was advised to head to urgent care or the emergency room to get checked out. I left fully believing I would be home in a few hours, in time for dinner or at the latest bed time. I went to the hospital and the ER/urgent care was busy so I sat and waited for my turn through triage. I was happy to wait because waiting meant it wasn’t a big deal and I was fine. After about 45 min I got called back and my blood pressure was 220/115. I spent no more than 15 min in the ER before being admitted to L&D. When I got to my room right by the nurses station and next to the triage room I’d delivered my first son in, I got in another bed with seizure pads already on the rails. I guess the long ER wait didn’t correlate to being ok.

I was in denial that I wasn’t going home to my boys so much so that I refused to take my shoes off. I wasn’t able to eat since they were concerned I was dangerously close to full-blown eclampsia. I had 5 min head-to-toe checks for two hours, then once my BP was “under control” at 160/90 it was reduced to every 15 min for 5 hours. The next morning my blood pressure spiked again. It was terrifying knowing I’d already had a TIA/mini-stroke. I was also unable to talk to my family. I didn’t bring a phone charger and my phone died shortly after being admitted.

Thankfully my nurse was amazing and helped store my expressed breast milk so my husband could come pick it up to feed Ezra. When he arrived with Ezra in tow all the nurses looked the other way because they said it was cruel and unusual punishment to keep a newborn from his mother “screw the visitor policy”. My nurse advocated for me to get me out of the hospital as soon as my 24-hr magnesium drip finished, instead of the more extended stay that I’d been told to expect. I was sent home on strict bed rest and BP meds because my BP was still crazy but controlled.

I had a second TIA at home but my blood pressure was in the range it was supposed to be so I stayed home, going to the hospital only added stress and anxiety which didn’t help in the least. I had a lot of follow-ups and wasn’t able to walk around the block until nearly 2 months postpartum without my heart racing and my blood pressure either going through the roof or tanking. On several occasions, I had to call out to my husband as I blacked out. I spent most of my maternity leave asleep on the couch or in bed.

The funny thing is I thought we’d escaped all complications and trauma. While I was incredibly lucky to be admitted to L&D instead of the stroke floor and am lucky to have no lasting effects it was so hard on me and my boys, my husband and Micah especially. While my OB is optimistic that a third pregnancy could have no complications I am terrified by the unknown, and we are worried about the risk to my health. I don’t know what the future holds and am still working through my grief with Micah’s early arrival and our loss of ignorance and ability to just go ahead and start trying to get pregnant/have as many children as we want. I am thankful for my boys but so often wish we hadn’t had to go through any of it and that I could still be blissfully ignorant.

My experience has affected my relationships with friends and family, especially those expecting. I am continuing to work on those relationships and finally admitted to my doctor how not ok I am which was a big first step for me. Not yet ready to do anything more than that but maybe in the near future.

My name is Sarah, I am a boy mom to two beautiful boys Micah (3) and Ezra (1). I work as a geologist in Wisconsin. We love going on adventures especially to the lakeshore and woods.

Heather’s Story: Preterm Labor, NICU Stay, And Complex Grief

by | Nov 7, 2021 | Uncategorized

Pregnancy

So many birth stories start with how easy their pregnancy had been. Mine was not. My first two pregnancies were easy, as were my deliveries.  My first was a spontaneous vaginal delivery at just shy of 39 weeks. My second was a scheduled induction with an easy labor and quick delivery. So I naturally assumed that my third would be just as easy. During my initial prenatal appointment, my brother passed away in a tragic work accident. I had come home from that appointment excited about the future member of our family but that excitement was extinguished as soon as I heard about my brother.  The next few months of my pregnancy were difficult due to normal pregnancy exhaustion on top of the exhaustion that comes with grief. During this time, I was convinced there was something wrong with the baby.  Until we had the results of the genetic testing, I was sure that the baby had Down syndrome. But the test showed that the baby had a very low risk and that it was a boy! 

The pregnancy continued to go pretty normal until around 26 weeks. I started to have intense pain under my ribs on my right side. I called my OB office and they sent me into Labor and Delivery. The on-call OB ran some tests but everything looked ok. She said it was probably baby wedged in my rib cage and that I should have some relief once the baby shifted his position.  By this point, that nagging feeling of something being wrong was back. Due to being advanced maternal age, I was having growth scans every 4 weeks and so far, the baby had looked great. At my 28 week ultrasound, they noticed that baby was measuring large and I had borderline polyhydramnios. The MFM provider was concerned that I may have gestational diabetes but my 1-hour glucose was normal. Over the next few weeks, the pain in my ribs was becoming more and more unbearable.  I was having difficulty walking and breathing and would spend most of my time at home in bed.  At my 32 week ultrasound, I had even more amniotic fluid and the tech noticed an anomaly with the left kidney. The doctor came in and took a look and believed that baby had a horseshoe kidney (which my oldest happens to have). A little over a week later, on 3/22, I woke up feeling off. I took my blood pressure and it was elevated. I also found that I had gained 10lbs in about 3 days and noticed that I wasn’t feeling the baby move as often as I had before. I went to work and at the end of the day called the office to let them know what was going on.  The midwife on call had me come in to be checked. By that time, my blood pressure had returned to normal and my blood work looked ok. Because I was only 33 weeks, I had to stay in triage until the on-call OB evaluated me.  Due to the high amount of amniotic fluid and how swollen I was, he was concerned that preeclampsia was going to develop in the next few weeks. He also explained that the rib pain I was feeling was due to having to use my accessory muscle to breathe and not due to the baby. He wanted me seen in the office twice a week until delivery. I left the hospital concerned about losing my job, not realizing that I wouldn’t be returning to work.

A Chaotic Birth

That night, I was having a hard time getting comfortable in bed. I was up constantly to use the bathroom and couldn’t find a comfortable position in bed. At 2:20 am, I woke up to fluid streaming out of me. I prayed it was just urine but when I jumped out of bed a massive amount of fluid continued to pour out of me. I woke my husband and tried to get dressed quickly, but every time I stood up more fluid would gush. After changing 3 times, I finally threw a towel in my underwear and we left.  The hospital I chose to deliver at was 30 minutes away and during the ride I had started contracting. By the time we arrived, my pants and the two towels I had been sitting on were soaked through with amniotic fluid. My giant belly was completely gone. The midwife and OB were still at the hospital and immediately came in to evaluate baby.  Things got tense as soon as the OB did an ultrasound. I had gone from having way too much amniotic fluid to literally no amniotic fluid.  Baby was also not tolerating contractions, his heart rate would drop drastically during contractions. My OB squatted down next to me and told me, “your baby is alive now, but he won’t be for much longer. If he’s not falling out of your body, I need you in that OR in the next 20 minutes or he’s not going to make it.”  As soon as I consented to the c-section, the room erupted into controlled chaos. The anesthesiologist told me he had one chance to give me a spinal, and if that didn’t work he was going to have to put me under. As they were wheeling me out of the room, I heard a nurse tell my husband that he couldn’t be with me. That was the moment it all became real.  Fortunately, the spinal worked and I was awake for the procedure. My midwife held my hand and the anesthesiologist wiped my tears. Sawyer Matthew made his debut with on 3/23/21 at 4:58 am, at 33 weeks and 3 days gestation. He was quickly brought to another room to be resuscitated and evaluated by the NICU team. A nurse brought him back to the OR for me to see him before they transferred him to the NICU. 

Unexpected Complications

Shortly after I was settled in my room, our nightmare began. We were told that he didn’t have a horseshoe kidney, but instead, they believed there was a large mass on his left kidney. It was determined that he needed to be transferred from the small hospital he was born at to Yale for more imaging and easier access to specialists.  I was able to visit him for a short time before he was transferred. I was finally transferred as well a few hours later and was able to see him again around 9:30 that night after an MRI of his kidney. I was hoping to finally hold my sweet little boy, but his temperature was on the low side. His nurse promised I would get to hold him in the morning and I was brought back to my room. 

When my husband arrived at the hospital the next morning, we immediately went to the NICU to see our baby. He had even more wires attached to his little body and gauze wrapped on his head. Earlier that morning, his nurse had noticed some seizure activity and they immediately started an EEG and attempted to get his seizures under control. They needed to do an MRI, but couldn’t do the test until his seizures were under control. While we waited for them to find the right combination of medications, we met with multiple different specialists. Oncology told us that they couldn’t diagnose his tumor until it was removed. Once a biopsy was done they could determine if chemo would be needed. The next day, we met with a surgeon who was fairly confident that the tumor on the kidney was a benign tumor known as a mesoblastic nephroma. The only way to know for sure was to remove the kidney and tumor for biopsy. But they wanted him to gain weight first and tentatively set the surgery for 4 weeks out.  Nephrology explained that he could have a completely normal life with one kidney but that we would have to do everything we could to protect that kidney. They finally had his seizures under control after about 36 hours and he was scheduled for an MRI. I rushed up to his room to see him before they took him and went back to my room to try to rest. 

At almost midnight, alone in my hospital room, I found out that my sweet little baby had diffuse brain damage, evidence of a hemorrhage, and that his brain was smaller than it should have been. They believed the size was due to a lack of oxygen while in the womb.  I was in shock.  How could we lose my brother and then have a baby with such complex medical concerns, all within a 6 month period?

Discharged Without My Baby

I was discharged the following day. The hospital social worker encouraged me to stay at the Ronald McDonald House across the street from the hospital. But how could I possibly be away from my other children for an undetermined length of time?  The only thing that kept me going was knowing I would be able to see them soon. Later that afternoon we met with a neurologist and was told that he has what is known as HIE. HIE or hypoxic-ischemic encephalopathy, is brain damage due to oxygen deprivation. In Sawyer’s case, it seems like his was due to the kidney tumor. The tumor caused the polyhydramnios, which most likely comprised the umbilical cord function.  The neurologist told us that with this condition, they can’t give us a prognosis until he’s older and missing his milestones.  However, looking at his neuro exam, she said he would most likely have some mild to moderate disability.  At that point, I was finally able to hold my baby for the first time after 4 agonizing days. At that moment, I knew none of it mattered. We would love that boy just as much as our kids at home. 

I was discharged on March 26 but continued to make the hour-long trip to Yale almost every day.  He was quickly weaned from any oxygen support and downgraded to the NICU step-down unit. He still struggled to take full feeds by mouth and relied heavily on the NG tube for nutrition. On 4/20, exactly 4 weeks after he was born, he underwent a radical left nephrectomy. They had warned us that he would be brought back to his room intubated but nothing in the world could have prepared me for that. To see him cry without making a sound still haunts me to this day. It took a few days but he was finally weaned from the respirator. As soon as he was able to, he began taking his bottles like a champ. Less than a week after surgery, his NG tube was removed and on 4/28, after 36 long days, he was discharged home and was finally able to meet his siblings 

Sawyer’s Recovery

Sawyer is now a happy and healthy 4 month old.  So far he’s met all his milestones and is doing even better than we could have imagined. He sees outpatient physical therapy once a week and early intervention comes to our home every two weeks for services. He’s beginning to show early signs of cerebral palsy, but once again we were told we have to “wait and see.”  The past 4 months have been a struggle for me. I’m dealing with PPD, PPA, and PTSD.  Studies have found that up to 60% of mothers develop PTSD from having a baby in the NICU.  Every doctor’s appointment brings on anxiety and heart palpitations. But it’s so much worse when I have to take the baby to Yale for an appointment. Just the smell of the factory I have to pass on my way there starts a domino effect. Racing heart, sweaty palms, intrusive thoughts, and shortness of breath are just a few symptoms I deal with on appointment days. But I’m seeing a wonderful therapist who is teaching me ways to overcome these feelings.

Since having a traumatic birth, I have had an overwhelming feeling that I should be helping other women like me. But as a school nurse, I couldn’t figure out how I would go about that. However, I was recently hired as a Labor and Delivery nurse. I’m hoping that this will be a healing experience for me and that I’ll be able to help mothers who have a negative or traumatic birth experience.  Birth trauma, having a baby in the NICU, and PPD have made me feel so lonely. But I’m not alone. And I hope my story helps another mother realize that she’s not alone too. 

About The Author

My name is Heather. I’m a mom of three. Oliver (7), Nora (3), and Sawyer(4 months). Plus I have an awesome 18 year old stepdaughter named Ashlyn. I am a registered nurse.