Tag Archives: Vasa Previa

I Know My Kid Better Than You

I Know My Kid Better Than You

When well-meaning medical professionals do more harm than is already there. Our journey to my son’s Cerebral Palsy diagnosis.

My son was a miracle. The doctors couldn’t tell me why he survived the horrific birth that he had. He was dead when they delivered him from a severe birth complication called Vasa Previa. His cord that was formed improperly broke in half during delivery and caused him to lose 90% of his blood volume. After 5 minutes of CPR and blood transfusions he was able to hold his own heartbeat. They told us the first 24 hours would be crucial and they couldn’t make any promises.

During those 24 hours he did great. The following 11 days in the NICU defied all expectations and he had no further complications. There was more talk about God from men and women of science and medicine than I had ever experienced. I think we left the NICU with several of them converted to Jesus if they weren’t already. And we weren’t trying to talk to people about God, we were just a living testimony of the power of faith.

During the stay, many nurses started the “He is going to be fine” speeches. “He is doing so good” we heard as we stared at our child on a cooling machine that drops his core temperature for 3 days to avoid further damage to his brain due to the blood loss. Deep down, as parents, as a mother I knew he wasn’t fine. But, in their defense, he wasn’t crashing and needing constant resuscitation like the 1 pound baby next door to his NICU room. At 8 lbs 4 oz, my son was a monster baby compared to the others in NICU. This made him appear healthier. I will forever thank God for the most experienced Neonatologist working my son’s case. He was the one that continuously warned us that though our son was okay right now, he may not always be. He could not pinpoint exactly what problems could arise, but like my own gut told me, he could also foresee a problem. After an MRI showed mild brain damage, that confirmation was there in my mind and this neonatologist. I asked if Cerebral Palsy was a possibility and he said there was no way to know right now. However, we still had another neonatologist and several nurses telling us as we left the NICU that brain damage can “fix itself sometimes” and “he is going to be fine.”

We set up services with a pediatrician just like you do with any child. He also went the “he is fine” route. He was choking on his milk and really struggling to keep liquids down. He diagnosed him with reflux and had us give him medication for it and thicken his milk with oatmeal. At the urgency of a cousin, we switched to her practice and started seeing her for pediatric care as she was a nurse practitioner and trained under our favorite neonatologist in the very NICU that our son was. She did an analysis of the MRI results and decided too that he was going to be fine.

Fast forward to about 6 months of age and he started crawling. He did it a little strange. I immediately started googling because it’s how I cope with the unknown of my child’s condition. My options were normal, autism, or cerebral palsy. I knew it was CP presenting itself. He also had these jerking motions when he would eat and at random times. We drove 4 hours to a pediatric neurologist and he showed no seizure activity and the neurologist said the likelihood of Cerebral Palsy was low and his shaking movements would go away in a month or two. After this we moved across the country for better medical care and for my husband’s new job. We started setting up appointments with a new medical team for our son.

Whenever he was born, his brain damage was classified as Hypoxic Ischemic Encephalopathy or HIE. We found a neurologist that had conducted a study on HIE babies and the following effect. We scheduled an appointment with him. He disagreed with the previous neurologist’s assessment of CP being unlikely and literally chuckled when I told him that he said the shaking would go away in a couple of months. At this point it had been 4 months at it was still happening. Our new neurologist set us up with a rehabilitation specialist and the NICU developmental clinic at one of the top children’s hospitals in the country.

We met with his new pediatrician which was very highly rated and seemed well received in the medical community. During her first appointment with him she said quickly “Oh no, he doesn’t have cerebral palsy, these movements are probably just stereotypies that will go away and his crawling his right on time and perfectly normal.” In her defense, I realize that she has parents that call her in the middle of the night over a hang nail. But this was not a hang nail. She recommended we contact the state funded early intervention program because of his birth history. She also stated that we didn’t have to worry about thickening his liquids anymore when he turns a year old since reflux resolves itself around 12 months of age.

We met with the rehabilitation specialist and discovered that she is one of the foremost physicians in the field of Cerebral Palsy, the former president of the American Academy of Cerebral Palsy, and a Goldstein award winner from the United Cerebral Palsy Foundation. So basically, she’s the CP Rock Star doctor. She quickly diagnoses him with Hypertonia and wanted to monitor him closely as he developed to watch for the formation of CP. She ordered Physical Therapy to start at 10 months of age.

He started walking at 13 months old. Developmentally he was doing great, everything on time. But just like with crawling, his walk was a little strange. He had a slight limp and his toes started turning in. At an appointment with the neurologist he said that he had Cerebral Palsy but he didn’t want to put it on paper until he was 2 just to be sure. Whenever Early Intervention came to my home with 2 social workers, a developmental screener, and physical therapist, and occupational therapist, and a speech therapist I had the worst experience I’ve had so far. The physical therapist said that she completely disagreed with the neurologist’s concerns about cerebral palsy. She disagreed with his physical therapist’s choice to put small braces on his feet for support. His regular PT had been working with him for months at this point and had made great progress with him. Each one of them said he was fine, he did not have any problems and our case was denied. (His diagnosis of HIE on paper alone should have qualified him).

I’m going to stop here and insert my rant. Most of the people who have told me “He is fine” at this point were the least experienced people in terms of neonatology, neurology, and Cerebral Palsy. No nurse should ever downplay an experienced doctor’s assessment of a patient. Nor should a pediatrician give a parent false hope that their child is fine when a world-class neurologist or experienced neonatologist disagrees. Pediatricians should not disagree with a specialist in their own field. NO and I mean NO physical therapist, occupational therapist, or speech therapist should EVER disagree with a doctor’s assessment of a patient. I have relied heavily on my instincts and I shudder at the thought of what could have happened if I just wouldn’t have. What if I would have stopped when the first pediatrician said he was fine. I wouldn’t have worried about finding him a neurologist who was an expert on his type of brain damage. That wouldn’t have led me to the doctor that prescribed his first bout of physical therapy. That physical therapy helped keep his hips aligned and helped him gain the strength to walk.

My son started experiencing pain regularly around the time Early Intervention denied us. We got the braces and I hoped that they would help with the pain. They did slightly but not completely. He was waking up at night with what seemed every muscle in his body flexed and I could lift him and he be as stiff as a board. His legs were very tight. His whole body would grow rigid. He screamed so much. I cried so much because I didn’t know what to do. His hands were being held in the strangest positions. I called the pediatrician and she said to give him Tylenol. (Like I wasn’t already giving him the highest dose allowed or something). I was horribly depressed during this time because I was watching my son in pain and I could see him physically deteriorating in front of my eyes.

I took him to an orthopedic doctor who said his scan looked fine. She also said that he probably had Cerebral Palsy and I needed to touch base with neurology. Our neurologist sent us to our CP rock star and we got an appointment with her. I was still very confused by which doctor handled which situation at this point. If somebody would write a book on special needs parenting, they would become very wealthy. I would do it, but I’m an idiot on the topic.

Finally get to rock star doctor and she diagnoses him with Dystonic Diplegic Cerebral Palsy. She ordered speech therapy and occupational therapy to accompany his physical therapy. She knew that based on his symptoms he would eventually develop a speech delay. He has a swallow study ordered and they discovered that his thin liquids were penetrating the wrong area of his throat and he suffered from dysphagia. He now has all his liquids thickened and he no longer chokes when he drinks. She prescribed him with a medication proven to reduce pain and muscle tightness in patients with dystonia and his life has been so much better. He no longer screams in pain daily. He doesn’t wake up at night stiff as a board anymore. His OT figured out that his hand movements were mostly sensory related and as long as we let him play in messy textures, his hand movements remain normal and untight. At 18 months old he now has a speech delay just like the rock star predicted. She knew that the brain damage he sustained and shows symptoms of regularly follows with significant speech problems.

What if I had never made it to that appointment because I chose to believe the wrong people? What if those people didn’t brush off each patient or parent as being paranoid googling hypochondriacs? What if we expected more from every medical professional and not just the highly decorated ones? My son’s type of Cerebral Palsy is one of the more uncommon types but that doesn’t excuse the professionals that disregarded me when my son showed symptoms of something abnormal from the beginning. I understand that we don’t want to create something that isn’t there. But, disregarding a parent or patient’s concern is unacceptable and I have experienced it all too much. I spent my entire pregnancy with him trying to convince 2 different OBs that something was wrong. It wasn’t until I bled out on the table that they believed me. Why does it take blood to convince someone? Why does it take a child in pain for a month before finding someone to hear that it’s not “just teething”? We should all expect more. I will forever respect and thank the doctors that saved my son’s life and mine. I am forever grateful for the doctors that told me the truth. I feel as though there are 3 doctors, 1 physical therapist, and 1 occupational therapist that have been wonderful, caring, experienced, knowledgeable, and useful in my son’s life.

There have been a total of 15 medical professionals that could have hindered his progress, ruined his physical being or ended his life before it began that include – 2 OBs, 2 NICU nurses, 1 Neonatologist, 2 Pediatricians, 1 Nurse Practitioner, 1 Neurologist, 1 Developmental Screener, 2 Physical Therapists, 1 Occupational Therapist, and 2 Speech Therapists. They all said he would be fine. They all said he didn’t have Cerebral Palsy. They all blamed his symptoms on something unrelated and treated him improperly. What if I would have listened to this group and not the other?

Based on my observation of his condition for 24 hours a day 7 days a week I can tell you. He wouldn’t be able to walk anymore because the tightness in his legs would have overcome him without the medication he is currently on. He would be exhausted from getting through the day in excruciating pain that Tylenol can’t help. Without the physical therapy he received, his tight muscles could have caused his bones to grow improperly and caused more pain and less mobility. His hands would have cramped into a position that would make him unable to grasp objects such as food and drink. He could have injured himself by now from the involuntary body movements that put him in awkward positions and make him a fall and injury risk. He would be unable to drink and would have been hospitalized for pneumonia or aspiration.

 

Always follow your instincts.

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Welcome to NICU

I didn’t exactly have the greatest first pregnancy. I had constant infections, a gall bladder full of stones they couldn’t remove, and stretch marks that made my stomach resemble something that had been attacked by a lion. She arrived as healthy as she could be though. It was 3 years later when the stick had a plus sign on it again. I really had a form of PTSD following my first pregnancy. (I’ve Googled it before, they are starting research into mothers with painful deliveries suffering from PTSD). My current self, post-second baby laughs at my former self, post-first baby.

I knew something was wrong this time around. From the very beginning my instincts were on point. My husband was really excited and wanted to tell everyone. I asked him not to because it was so early and I knew something was wrong. We had taken the test as early as it could read and I was about 4 weeks pregnant. We actually ended up fighting about it because he was so overcome with joy and I felt nothing but fear. I remember distinctly telling him “Stop being happy, something is wrong.” Who does that? Who tells their awesome spouse to stop being happy? I was such a bitch about it. (Eventually I was right, but at the time, I could have chosen my words better).

I called the doctor and they didn’t really see patients until 7 weeks but I knew I had to get in sooner. I called over and over and told them that something just felt wrong and eventually I said that I was having cramps. Finally, the OB ordered blood work and it came back with dangerously low progesterone levels. She said that my body would miscarry without supplementation. So I started on hormone supplements for 4 weeks. I had an ultrasound at about 8 weeks and it was the cutest thing ever. It looked like he was waving at me. I went home and felt better about everything than I had since it started. Then I woke up at 3am gushing blood.

I was sitting in the bathtub sobbing. I knew I was losing the baby. I just knew it. I remember saying to my husband “I finally allowed myself to love it. I love it. It can’t die.” He called the OB’s emergency line and she told us to go to the ER if we wanted to or we could let the baby pass at home. We chose to go to the ER after dropping our older child off with my parents. It was a very scary drive. I had stopped bleeding though and that was a good sign. They did an exam and my cervix was closed and then they did an ultrasound and there was a heartbeat. The baby just didn’t move much. This entire story happened again at 12 weeks. The bleeding just started during the day instead of at night. Heartbeat good, baby just not moving much.

I decided to switch OBs and get to one a little closer to home (even though it was still an hour drive). We found out we were having a boy. But, my blood pressure started creeping up with each visit. The second trimester was fairly uneventful other than the impending feeling of doom I constantly felt. By the third trimester, my blood pressure was concerning enough to warrant a weekly ultrasound. Each one was uneventful, he was big and didn’t move much. At my 38 week ultrasound they found that the cord was wrapped around his neck twice, possibly a third time and the OB felt it was time to induce. So we scheduled for a few days out.

We checked in on a Thursday morning and I was prepped. We were going to go through with the natural delivery since the doctor felt confident it was the safer option and he could unwrap the cord during delivery. They had set up a nice area for the baby to stay in our room after the delivery. During labor the baby started to show signs of distress. They had me lay on my side to help blood flow but it was not improving. The doctor came in and decided to break my water. I had dilated and was progressing well. He broke my water and what started out as a gush of liquid became pulses of liquid. The doctor told the nurse “We have a lot of blood here” and then he muttered some other things quickly. He put his hand on my leg and said “You’re going to have a C-section now.” Then he ran.

Nurses started appearing from everywhere. Everything happened very fast after this. I remember a nurse telling my husband that he wouldn’t be able to go in because they were going to have to put me to sleep. They started pushing my bed as fast as they could towards the Operating Room. It’s cold in there. There were at least 20 people in the room once they got me in there and only 3 minutes could have passed since I started gushing blood. I’ve always been good at reading people. During a job training I was certified in micro-expressions, the study of people’s emotions as shown on their face. As I looked at the 20 something people scrambling around my hospital bed in this very cold operating room, I’ve never seen so many faces plastered with fear before in my life. I knew then that I was in trouble. The anesthesiologist had put the oxygen mask over my face and told me I would be asleep soon.

I prayed. I told God that my husband couldn’t make it without me. And I couldn’t make it without this baby.

Looking back now I realize that my instincts and my faith in God are the only reasons my son and I are alive today.

I had a button that administered some pretty nice medication after surgery. That nice medication made everything awful blurry after that. What I can tell you is from the accounts of my husband, the doctors, and my medical records. I suffered from a rare pregnancy complication called Vasa Previa. When undiagnosed, it is almost always fatal to the infant. Because we didn’t know we had Vasa Previa at birth, my son had a 5% survival chance. Think of an umbilical cord as like an electrical cord. Without that protective covering, it would just be exposed wires. Vasa Previa is like having exposed wires and the amniotic fluid (the water) is all that kept it intact. Once the wires were exposed, all blood is lost from the baby. I was officially diagnosed later with Ruptured Vasa Previa, Placenta Previa, and Placental Abruption.

The amazing medical professionals got my son out within 11 minutes of the rupture. He had lost approximately 90% of his blood volume. He had no heartbeat. The nurses compared his color to that of an ashtray or a white sheet. It is unclear how long he had been dead. They started CPR and immediate blood transfusions, it took 5 minutes for my son to hold his own heartbeat without manual assistance. My husband saw the nurses rushing him out of the OR to the NICU and was able to see him briefly. Two nurses were manually breathing for him. One pushing air in and the other pressing his belly to get the air out.

I had pinned so many thing to my Baby Board on Pinterest before all this happened. I knew exactly what I was going to do differently this time to breastfeed accordingly. I had a better breast pump. We had the crib ready. We were excited for boy things and not so much pepto pink. I had different types of bottles and pacifiers and diapers and wipes and diaper genie refills. We were ready…

After my 24 hours of medicine magic button ended, it was time for me to go visit my son. The nurses had removed the nice little area in our room at some point. That was thoughtful of them. My son was born exactly one week before Christmas. So there were Christmas decorations everywhere. A little jingle plays in the hospital each time a baby is born. I wondered if they played the jingle for my son since he was kinda born dead.

You have to put on little gowns and rub your hands with a disinfectant that has a smell that you could never forget. We could only touch him with gloves. When I saw my son for the first time he was beautiful. But I couldn’t breastfeed him like I wanted to because he was being fed through tubes attached to where his umbilical cord would have been. He was swollen and very pale. I knew my life was never going to be the same.

Welcome to NICU.