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.
