The Chace Thomas Story

Hello my name is Katie Thomas and here is my story…When I was about 12 weeks pregnant I developed a bad cold with a bad cough. One night while I was coughing, I felt a little gush of fluid so I ran to the bathroom and noticed a tiny amount of blood spotting. We rushed to the Valley ER. They did an ultrasound and blood work right away and that is when we found out that I had a very small tear in my placenta. Doctors reassured me it was very small and would repair its self naturally. We think it was from all the coughing I was doing. After my lab work came back, we learned that my baby’s blood had mixed with mine. Normally, it would not be a big deal but my blood was incompatible with my baby’s blood type. My body created antibodies and were attacking the baby’s red blood cells. He had big “E and little c” in his blood type and my blood type rejects “E and c” so my body went into attack mode and I developed Anti-E/Anti-c Titers. This means my body thought the baby was a foreign object and was trying to protect its self. Also, the gush of fluid I felt when I coughed was urine…I peed my pants!

The ER sent their findings of the Anti-E/Anti-c titer to my OBGYN. She did not know much about Anti-E/Anti-c titers so she sent me to a high risk pregnancy Perinatologist.

I had to be on a close watch with a high risk pregnancy Perinatologist at the Hospital for the rest of my pregnancy. I had an NST and a MCA ultrasound twice a week. They were measuring my titers, making sure the baby was not getting anemic and watching for hydrops (swelling in the brain) in the baby’s brain. For the most part, the pregnancy was a success. I made it to 38 weeks before I gave birth, my titers were measured a few days before I gave birth and my E titer was at 1 and 16. The little “c” titer was measured at 1 and 4. The whole pregnancy my titers remained stable so we were very assured by the Perinatologist that was good news and I should have a normal healthy delivery. My husband and I were under the impression that my body was the problem. We thought as soon as he is out of me he would be clear of any potential problems. No one told us that any problems could happen after that baby was out of me.

On September 25, 2008 I went into labor at about 2am in the morning. When I arrived at the hospital I was dilated 5cm so they admitted me right away. At around 9am I remembered that I had an appointment with the Perinatologist that day. So my husband Corey called the perinatalogist office to let them know that I was in labor. We even asked if the ultrasound tech. if she would like to come up and visit us since we were only two floors above them. The tech. and I had become close friends throughout my pregnancy since I had to see her and the Perinatologist twice a week. I was also under the impression that the Perinatologist would be involved in the delivery since I was high risk and I had been seeing him twice a week for almost my whole pregnancy. He never did come up to see me or the baby. The last time I saw or heard anything from him was 3 days before I gave birth.

At 12:42 p.m. I delivered a beautiful 8 pound baby boy. He came out peeing all over the doctor! Chace was very red and sleepy.   I kept saying to the doctors and nurses “Is he okay because I had an Anti E-titer/Anti-c titer in my blood?” They all assured me he was a perfectly healthy normal baby boy. They did all the normal infant screenings and his APGAR test was a 9 out of 9. He was a perfectly normal and very healthy… so they told me. I requested a Lactation Consultant several times to come in and help me nurse because he acted so lethargic and was not interested in eating. The lactation consultant told me that it was totally normal since I had such a quick traumatic birth (Her words not mine). He did come out after only two pushes and had some bruising on his face from delivery, but I would not say it was traumatic!

Again, they all assured me he was just fine and that they see that all the time. So I trusted them since they are all so educated in the medical field. I tried to relax and every hour I kept trying to get him to eat. Sometimes he would latch on for about 2-3 min and nursed good but most of the time he was just too sleepy to eat.

In the early morning of September 26th, my OB came in and looked me over and told me I could go home.   I was excited to bring my new baby boy home to meet our daughter, Charli.   The doctor told me that I will have to wait until the Pediatrician comes in to discharge my baby before the baby could go home. So I was a little panicked that we might be separated. The Pediatricians Nurse Practitioner came in a couple hours later and looked him over. She said he looked really healthy but she wanted him to stay another night since he was not breastfeeding very well. At first I was a little worried because I had just been discharged. I was upset and worried that we were going to be separated.   She assured me that I could stay with my baby until he was released.   I was okay with that. I thought It would be good bonding time for us. anyway I was anxious to get home to see my 2 year old daughter but I also wanted to do whatever was best for my baby.

A few hours later a nurse came in and asked me why they didn’t release me yet. I told her that the Pediatricians Nurse Practitioner wanted me to stay another night. She said “he is perfectly healthy so I don’t see why you couldn’t just go home and be with your family. He will probably eat better for you at home anyway. I will go call the Pediatrician and ask him.” I said “okay but if I have to stay, I will. It’s no problem at all. As long as we get to stay together I’m happy”   So about an hour later the Pediatrician who was also our family friend showed up and looked over Chace. From what he saw, he didn’t see why we couldn’t just go home. He signed some papers and made an appointment for us to come see him the following Wednesday. It was a Friday afternoon and he said he could not get me in on Monday as he would be out of town visiting his son at college and also he doesn’t work on Tuesdays. So it would have to be Wednesday.   So we scheduled the appointment for the following Wednesday. 5 days from that Friday! We later learned that is against their policy. ESPECIALLY when baby is high risk. We were not supposed to leave before 72 hours.

We were released on Friday September 26th at around 4pm.   So about 27 hours after birth we went home. Chace was still not eating as much as I would have liked him to but I just kept reminding myself what the lactation consultant said to me about being extra sleepy because of the quick birth and bruising on his face. I had my alarm set for every two hours to get up and nurse him. I did find it odd that I was having to wake him up to eat instead of him waking me up all the time. Again, I just kept reminding myself that the nurses say this is normal and he will eat when he wants to eat.

On Sunday afternoon our neighbors came over to bring us a chicken casserole and meet the new baby after they got back from church. She is a Mother of four and also a licensed Doula. She sat right next to me on the couch admiring our sweet new baby boy and didn’t notice anything wrong with his color. Like I said he was a very red baby from the start. She and her husband stayed for about 30 minutes.

On Monday morning, September 29th, I went to the WIC office to see about renting a breast pump. After we got all set up with the pump, she asked me if I had any other questions. I told her I was a little worried about his color on his nose and how sleepy he was. I told her I couldn’t tell if it was a little jaundice on his nose or if the yellow was from the bruising on his face going away. (FYI…That’s what bruises do when they go away…they turn yellowish.)   I told her I have an appointment on Wednesday and asked if I should just wait to talk to the Pediatrician then.   She tilted her head to side and said “Mmmmmm You should probably call your pediatrician and take him in today to have him seen” Thank GOD I listened to her because I was going to wait until my Wednesday appointment. I had no idea he was dying rig before my very eyes. We found out later that if I didn’t bring him in when I did he would have dried. His internal organs were shutting down.

So I called the Pediatricians office right there in the WIC office and they said we could come in around 2pm.   The secretary reminded me that the pediatrician (Our family friend) was not there but I could see his nurse practitioner.   I already knew that he was out of town so I told her yes that was fine to see his Nurse practitioner.   By then, the whites of his eyes were turning yellow. He was an orange-ish red color. When we got there, the Nurse practitioner took one look at him and said “he’s a pumpkin! He needs to go to the Hospital ASAP. He has jaundice”. I was not that alarmed because I knew jaundice was no big deal…well, so I thought.   She said I will be right back and left the room. When she returned to the room, she brought his regular pediatrician in with her. The one that told us that he would be out of town. To this day I still don’t understand that whole thing and why he said he was going to be gone. Anyway, I started crying and the Pediatrician assured me that he would be fine, this is normal and I would probably get to take him home in about a day or so. We took him right down to the hospital. Staff from the NICU were there waiting for us.

They let me carry him right over to his little NICU room. They were very sympathetic to us and said I could hold him after they got the IV in and he was all situated. They didn’t want us in the room while they were starting the IV so they sent us down to the cafeteria for some food. I was way too upset to eat. I couldn’t wait to get back up there and hold my baby. So after about a half hour or so we came back up to the NICU to our son’s room.

THIS IS WHEN THE NIGHTMARE BEGAN.   When we got in there, it was like a scene out of a movie. The doctor was on the phone with the blood bank with fear in her eyes. She was holding up her pointer finger at me to give me the “just a second sign” because she was on the phone. Beeps from all the monitors were going off and all the nurses were running around trying to get Chace situated. As soon as the doctor was off the phone she said “Your sons bilirubin levels (jaundice) are dangerously high and we are going to have to preform a double volume blood exchange transfusion on him.” That means removing all his blood and replacing it two times.   His billi level was at 33mg.

I naively said to the doctor “Yah but isn’t jaundice normal? Don’t most babies get it”   She said the normal for a newborn baby with jaundice is usually between 2 and 10. She said anything above a 25mg starts frying the brain and can result in brain damage, blindness, deafness, Cerebral palsy or even death.   So of course we were in total shock.   We did not want to lose our baby boy.

The doctor sat me down and said “tell me about your pregnancy. Were there any complications?” I told her about the E and c titers and that I was seeing a high risk specialist my whole pregnancy but my titers remained stable the whole pregnancy and I had no complications. Her eyes opened very wide and she said “this is what caused your son’s high bill level. He should have been being monitored….You should have never been sent home”   I had chills go down my spine when she said those words.

I told her “I don’t understand…. I thought once he was out of me he would be fine. Also, we have had friends that had babies with jaundice and it was no big deal. We thought sometimes babies turn yellow and either work it out on their own or sometimes they need the lights to make the yellow go away. We had no idea it could be life threatening. How could this happen? We just had a perfect healthy baby 4 days ago. She said when you have E and c titers it is part of the RH blood incompatibility group and it’s almost inevitable that they will get jaundice. Baby’s with this condition need to be monitored for jaundice every three hours by blood serum and should not be releases before 72 hours after birth. I asked her “Why would they release us then?” She said “Yah good question. You have a case if you want to pursue legal action”   We immediately said “oh no, we wouldn’t do that” we are not the suing type plus the pediatrician was a family friend from church. I didn’t want to get him in trouble. I didn’t understand at the time how close he was to dying that this was all 100% preventable.

The NICU staff said if I didn’t bring him in when I did, it would have been fatal. His body was shutting down and he was having Shallow breathing Respiratory Insufficiency. He had Several episodes of central Apnea on admission requiring moderate stimulation and nasal cannula for oxygen. He showed no signs of C02 retention. This is presumed secondary to his high billirubin level.   Direct bilirubin: 0.9   /   Neonatal bilirubin: 33mg   / ALT: 16   /   Albumin: 2.9

“I was so upset… This was not the way it was suppose to go. I wanted to have another perfect birth story like I did with my daughter but it was far from it.”

It was almost 6pm at that time and between the hours of 6 p.m. to 7 p.m. no visitors can be in the NICU. I guess that is when the nurses change shifts and do their charting. So they let us stay in a parent room for that hour. After the hour was up we started walking towards Chace’s room and his NICU Doctor came up to us and said “I was just going to come to your room and get you. I have news… I’m so sorry but we wont be able to do the surgery in a sterile room.” I broke down in tears even more and I said “He has to have surgery?” She said “Yes and there is great chance for infection because the room will not be sterile. I have to trust my nurses and they do not feel he is stable enough to be moved to a sterile room. So we will preform the surgery in the room he’s in right now and I need to prepare you for the chance of complications and even death.” So of course I’m still sobbing and I say ” I don’t understand… why does he have to have surgery. What will you be doing surgery on?” She grabbed her head and then shook it. She said   “I’m so sorry but I’m confusing you with another family.” Corey and I were just in awe and furious. I do understand people make mistakes but this is the woman that was going to be performing a double blood transfusion on my son to save his life.

The blood was ordered and did not get there until after midnight. Once the blood arrived they said we could not be in the room during the transfusion but they promised they would come get us when it was done. They had us say our goodbyes to him just in case he didn’t survive the blood transfusion. She told us he could reject the new blood and possibly die. That of course made us very emotional. They would not let me hold him and kiss him goodbye. I had to squeeze in between the Billie lights and the incubator bed to give him a kiss goodbye. They sent us off to our room and we waited and waited. Finally, 6 a.m. rolled around and I went to the nurses station and asked if the transfusion was all done and they said “yes. It has been done for a while now and so far he seems to be okay.” I said “Why didn’t anyone come and get us? They were suppose to come get us as soon as it was done.” The nurse had no answer for that.

I went straight to his room hoping to hold him and they again would not let me. Not even for a few minutes. I wanted to nurse him and let him know his Mommy was there with him. We needed to bond with each other. I was so upset that my little baby boy had to go through all of this. The nurses said “Katie, him being under the lights is more important than your bonding time with him right now.” I was so upset by that comment and was crying over his little bed. Tears were dripping over his little yellow body. I still needed to have some sort of contact with him so I held his tiny hand and rubbed it with my thumb. The nurse quickly slapped my hand away and said “He does not like that right now and he does not feel good.” I started crying even more when she did that. She said “the reason why they don’t like it is because they don’t like to be stimulated when they are so sick” So I had no bonding with him for almost 9 days. Every day they kept saying to me “maybe tomorrow you can hold him.” I even asked if I could have the lights shine on both of us while I tried to nurse him so he would get his light treatment and Mother baby bonding with me. They said NO to that idea and said it would be too much trouble to put the lights on me and the baby while I held him because they would have to move all the wires that were connected to him. They didn’t think Mother baby bonding was important. One of the nurses even said “they are like sheep at this age, they will go to anybody and they don’t know who their Mother is yet.”   I know I probably sound like a drama queen by saying this but I truly felt tortured there. It felt like it was their baby not mine.

The nurse said the only thing I could do for him right now is pump my milk for him. So I did. I began pumping like crazy so he would get all the benefits of my milk while he was in the NICU and I hoped that once he was released I could nurse him full time. I nursed my daughter until she was 13 months and it was a wonderful bonding experience so I wanted Chace to have that as well.

When I was no longer allowed to sleep at the hospital anymore, I would leave several bottles for the nurses to use while I was away from him. One morning I walked in and saw a nurse feeding my son with Formula. I said “I have pumped milk in the fridge.” The nurse said she didn’t see any in there. So I went to the fridge and all 5 bottles that I had left the night before had disappeared. To this day we have no idea what happened to them. I was furious.

On the following Saturday…so about five days into his NICU stay the doctor told me that he had another Destat (breathing pause) and would not be able to be released on Sunday as planned. I was very emotional.   I just wanted to hold my baby and have him home with our family.   I called my husband to have him look up the family friend/pediatrician’s home phone number because I wanted to let him know that they were keeping my son another week.   He was not there so I left a message.   As soon as I hung up I walked down the hallway back towards my son’s room and I see our family friend/pediatrician walking through the NICU doors. I was so excited to see him. I went over to him and said “Did you already get my message?” He said “No, you left me a message?” So I said “Wow! Are you just here on a Saturday just to come visit Chace? That is so nice of you”   He said “Not exactly. The hospital had me come in to explain how this happened to Chace. All your health care givers were there and all Chace’s health care givers were there.”   He then went on to say that he and the lactation consultant really got into it and were yelling and pointing fingers at each other. So in my opinion they all knew they messed up at that point and got their stories together.

I explained to him that they were keeping my son Chace another week because of the destats. He told me to go in my son’s room and wait for him. He was going to go talk with the doctor and see what was going on.   He came back in and said “Katie lets go for a walk”   we walked the hospital halls together. He said “Sometimes doctors over react and unfortunately that is what they are doing in this case. As soon as this doctor is off call a new doctor will be assigned to him and I bet they will let you all go home” So of course I’m going to trust my family friend that what he is saying is true.

I was grateful that the doctor saved my son’s life but I was also kinda mad because I felt like she was torturing me by not letting me hold him and not letting me take him home. I didn’t know how serious this was. I have a doctor that I hardly know telling me he is very sick and then I have my family friend telling me that doctor is over reacting. I chose to believe my family friend.

Later that evening, my parents watched our daughter while my husband and I went to the hospital together to see our son. When we got there, the NICU doctor sat us down and told us he did not pass the hearing test and that he was completely deaf and there was nothing more they could do for him. I said “are you sure because the guy that performed the hearing test earlier today said there was too much interference and he would try again Monday morning.” She said “well I have the report right here and it says he failed the test.” Then I said “are you sure you are not looking at the results that had interference?” I really felt that is what she was looking at. I think she just did not want to look like she was making another mistake in front of us again. So she said “yes, I’m sure and we had the Pediatric Neurologist look at him and he agrees that Chace has profound hearing loss and will require a lot of Developmental Intervention.” My husband burst into tears and was very upset but I didn’t cry at that point. I just felt numb and I also had a feeling she was wrong.

9 days later we were finally released from the NICU and our family friend/pediatrician sent us to a hearing specialist/Audiologist . She performed a OAE hearing test on him and he passed! We all celebrated and thought it was a miracle. He could hear 100% so we thought. I didn’t know there are two different types of hearing tests. There are OAE which is a standard hearing test and then there is ABR hearing test. This test is the most accurate hearing test there is and it tells you how the brain is receiving sound.

I will come back to this part in a minute.

So we continued to see our family friend/ pediatrician for several months. I even asked him to be the God father at my son’s baptism because he was a hero in my eyes and he was Catholic.   When Chace was around 6 months old the NICU called and wanted to see Chace for follow up. They said when kiddos are in the NICU they like to see them back at 6 months and 12 months of age. So I brought him in to a developmental specialist. She was concerned he was pretty delayed. I told our family friend/pediatrician about this conversation and he said “phsshh he’s fine. Don’t worry” Then around 12 months of age I brought him back in to the development specialist and she said the unexpected….she said I’m pretty sure your son has cerebral palsy and is going to require a lot of development intervention. She said this was all caused from the high billirubin levels. She said he will need a lot of PT, OT and speech. She also thought we should learn sign language because his hearing could go out at any time.   Of course I was very upset and went straight over to the family friend/peditricians office. He was enraged and said this was all nonsense and asked me for her business card so he could call her to see what was going on.

Soon after this appointment, Chace was rolling his eyes in the back of his head and acting dizzy. I thought for sure they were seizures.   I called the family friend/doctor and told him that I think Chace needs an MRI because I think he is having seizures. He yelled on the phone “I WILL NOT ALLOW HIM TO HAVE AN MRI UNTIL HE IS AT LEAST THREE YEARS OLD.”  Funny how he picked age three knowing that the statute of limitation for a lawsuit is at threes years.

Anyway, a couple days later on New years eve he did this eye rolling thing again. We didn’t care what our family friend was saying anymore. So I video taped the eye rolling and the odd movements and my husband and I took him down to the ER. I showed the ER doctors the video and they said “Yes, I’m pretty sure those are seizures” so they admitted him to the hospital.