Kai’s story- Fetal surgery at 19 weeks

In Burmese the name Kai means “unbreakable.” This is a definitely a story about a little baby boy that refused to submit to defeat. He truly is unbreakable.

The Beginning of Our Whirlwind Journey

My husband Rory and I went into the Millcreek Imaging Center to get the ultrasound of all ultrasounds, the one which reveals if you are having a boy or girl. We were so excited to finally find out what we were having. For pretty much the entire pregnancy I had a feeling it was a boy. Rory didn’t really feel a pull either way. I got on the chair and the technician put the blue goo, the goo I have seen in all the movies, on my abdomen. All of the sudden, in front of me I saw our baby. The baby was perfect. Everything measured the way it was supposed to. The heart beat was so strong. I could fall asleep to that sound every night. As the technician kept looking around at all of the baby’s nooks and crannies she announces, “It’s a girl!” A girl, I was shocked, not upset at all, but shocked. I was so sure it was a boy. I looked at Rory, both of our eyes tearing up. We were so excited. As she kept looking around trying to get a face shot of our very shy baby, Rory and I discussed how fun a little girl would be. We talked about the nursery, clothing etc. We were ecstatic!

After about a half an hour she decided to let me empty my VERY full bladder and then complete the ultrasound. When I came back she looked at a few more organs and then said we were done. I was getting myself ready to leave when she asked if we could try performing an ultrasound while I was lying on my side. She really wanted to get a better shot of our sweet baby’s face for us. So I got back on the chair and lay on my side. She poked around to get that little baby to move so we could see the face. As she was poking around she stopped and said “you are going to hate me.” With that she typed “it’s a boy“ on the screen! We were in shock. She told us that she had done ultrasounds for 25 years and this had NEVER happened to her. Apparently the umbilical cord was wrapped around our little guy’s nub, which made it look like he was a girl. Rory and I laughed and laughed. We were so relieved she took another look. A boy! I knew it! I have to admit I felt pretty good about myself.

She asked us if we could stay in the room while she had the radiologist look at some of the scans. We waited as patiently as we could, “was something wrong? I kept asking myself. Finally she came back. She looked a little nervous which made me a little more nervous. She then told us that our sweet baby looked like he had clubbed feet. Immediately, Rory and I felt the feeling of concerned parent wash over us. It was definitely a new experience. She began to explain that the legs were straight, but that the feet actually turned in at the ankle. Rory and I left the imaging center feeling a little bittersweet. We were so excited to find out we were having a boy, but then sad and concerned that there was something wrong with our sweet boy.

A couple of hours later I got a call from my midwife. She said she got the results of our ultrasound and said there was another issue of concern other than the clubbed feet. She explained that sometimes the amniotic fluid can form into bands and wrap around the baby’s extremities and cut off circulation. She said that on the ultrasound there was a small mass on our baby’s left foot and she thinks it could be banding. She told us she would like us to see a specialist at St. Mark’s Hospital. I got off the phone very confused. I kept thinking, how can amniotic fluid form into bands? It’s fluid. I tried to explain what our midwife said to Rory, but I just didn’t really understand. The next day I set up an appointment with the specialist for four days away and then we waited.

Day 1: Our Trip to Houston

We showed up for our appointment with Dr. Ball at St. Marks Hospital the Tuesday morning after our initial ultrasound. We went through about an hour of ultrasounds with a technician before we saw the doctor. The technician pointed out some of the bands for us. They were very thin, web-like and they were everywhere. Later, we saw Dr. Ball. He also looked around at everything for another half hour. While performing the ultrasound he explained to us that my uterus had collapsed. I had never heard of this before. He explained there are two linings to the amniotic sac. The inner lining is called the amnion and the outer lining is called the chorion. In a normal pregnancy these linings are supposed to fuse together, but mine did not. He explained the process was like a balloon being blown up inside another already full balloon. Between the linings there is a very sticky substance that fuses the linings together. At about five or six weeks our little guy happened to kick through the amnion, causing the lining to start breaking apart into the amniotic fluid and forming into bands with the sticky substance coating the bands. These bands gradually started wrapping around his left ankle, right knee and around his little wrists which bound his hands together. There were also bands found on the back of his head. Rory and I couldn’t believe what we were seeing.

The Doctor stopped the ultrasound and began to explain to us what we were up against and what our options were. He explained our case of Amniotic Band Syndrome (ABS) was very serious. He also explained that it was a very rare condition and there was absolutely nothing we could have done to prevent it. Like being struck by lightning, it was a very random occurrence. Then he started listing off our options.

The first option was fetal surgery. He explained that the bands would be removed from the baby in utero. Rory and I had never heard of this kind of surgery. I had no idea a baby this tiny could be operated on inside the womb. The doctor, however, did caution us on this option since our case was so serious and there were many bands to deal with. He had done these surgeries before himself, so he knew the risks very well. He basically told us that there was less than a 50% chance of success and it was very possible that all the bands could not be removed. He also said that it was very risky to our baby’s life.

He told us the second option was for us to just wait it out and see what would happen, which was a stressful way to go, to have no control or way of helping our child. He then went on to our least favorite option, terminating the pregnancy. Rory and I couldn’t believe what we were hearing. How could we terminate this sweet baby’s life because he could possibly lose a limb or two? He said presently there was a very strong chance that our baby would lose his left foot since the band was so tight around his ankle if we left this alone. He then began to explain that the banding could get worse on his hands and he could lose them as well. Basically as time would go on we would have no idea what limbs he would lose or if he would be born a still birth because of strangulation of his neck or the umbilical cord. I looked at Rory and he looked at me with the same expression…defeat.

This was in my mind seriously the worst possible experience a new parent could go through. The doctor was basically telling us that if we chose not to abort the pregnancy or have the surgery we would have to slowly watch these “death strands” take little pieces of our beautiful baby boy. There was the real possibility of having to watch him slowly get strangled to death. No parent should ever have to go through the horror of watching their baby go through that. We told the doctor since the outcome for surgery didn’t look so good and aborting the pregnancy was not an option, we would just have to keep an eye on the bands and see what happens. Before we left, the doctor mentioned that he had a friend and colleague that worked in a medical center in Houston that was a fetal surgery specialist and had performed many surgeries for babies with ABS. He told us he would try giving him a call to consult with him and get back to us.

With that we went to front desk to set up another appointment and left. Our hearts were so heavy. We didn’t even know how to process what we had just seen or heard. We just went back to the car and cried, holding each other, begging God for a miracle. It is said that ABS affects 1 in 10,000 babies or so. All we could think about was why did it have to be our baby? Why did we have to be that 1 case in thousands of pregnancies? I felt numb; I had no idea what to do.

I was supposed to go to work after this appointment. I didn’t know how I was going to get through the day. After returning home, I got in my car and headed out to work. It was hard to see the road at times since my eyes still had tears in them. About ten minutes into my drive I got a call from Dr. Ball. I pulled over so I could focus on his news. He told me that he talked to his friend in Houston, Dr. Befort, and he wanted to see me right away. Dr. Ball explained that his friend had started using a brand new procedure that involved pumping CO2 gas into the uterus to expand it so they would have more room to work in order to cut more of the banding. I couldn’t believe what I was hearing. He also said that there was possibly a charity fund available for us that would cover the procedure. I thanked him over and over. My head was spinning, I was so emotionally overwhelmed. I asked the doctor if he could call Rory and relay the news to him since I was so overwhelmed. He agreed and we hung up. I made it to work. Luckily, I was all by myself so I just sobbed at my desk. Was this really happening? Do miracles really happen this fast? I prayed at my desk and thanked my heavenly father for hearing our prayers and responding so quickly. Fifteen minutes later Rory called and we just cried about what just happened. We decided to look at this as an answer of what we should do and move forward with going to Houston.

Rory called Dr. Ball back to tell him what we decided. I was able to get out of work early so we could work out the trip. When I got home about 2:00 Rory was already on the phone with the Fetal Center in Houston. They wanted to set up our ultrasound and consultation for 8:00 am the next morning. Everything was happening so fast. Rory told them that we would look at plane tickets and let them know.

Second miracle of the day, we found two tickets for Houston that left at 5:15 pm for $200 a ticket. It was amazing! It gave us just enough time to get packed and ready to go, and we would be arrive with enough time to get a little sleep. The only other options were two flights that left about 9 or 10 pm and got into Houston the next morning at about 6 am for about $800 a ticket. We booked the tickets for 5:15, packed, arranged a ride with Rory’s mom, and left for the airport within the next hour. During our flight, I really felt my baby kick for the first time. It seemed to me to be a reassurance that he felt what was going on and was excited that we were going to Houston to save him.

We arrived in Houston around 11:30 pm. Erin Holbrook, a friend of mine that I hadn’t seen since high school, saw my post on Facebook about our situation and said she had moved to Houston only the previous weekend. She offered to pick us up from the airport and take us to our hotel, even though she had a one-month-old newborn. This was yet another miracle to add to rapidly growing list. We headed out to a Best Western that was directly across the street from the Texas Medical Center that the nurses had told us about. Thankfully, they had exactly one room left for us. We got up to our room about 1 am and prepared to get a little sleep before the biggest life changing day of our lives.

Day 2: Surgery Day

After having breakfast at the hotel, we arrived at the Fetal Center for our ultrasound around 7:30 am. A nice woman called us back to the ultrasound room. She performed the initial ultrasound just like the other technicians did. About an hour into our ultrasound, four doctors and a nurse came into the room. One of the doctors was Doctor Belfort, the friend of Doctor Ball. The other doctors were Doctor Espinoza, Doctor Ruano, and another doctor that was visiting from Stanford. Doctor Espinoza took over the ultrasound so he could look at our little guy’s left foot. They wanted to look at how much blood was actually getting to the foot. There was very little blood flow, but there was some which gave them hope.

About another half hour went by and three other specialists came into the room. In particular, one was a pediatric plastic surgeon that had worked on babies with ABS. He had actually helped to rehabilitate babies that had been affected by ABS. He said that the nerves were typically the last things to get damaged by the bands, and so if there was a little blood flow, that gave him hope that the nerves had not yet been irreversibly damaged. I couldn’t believe how many doctors and nurses were in that room with us just staring in awe at my baby. I felt like a medical marvel of science. After everything had been checked two or three times Dr. Belfort began to tell us about the surgery. He cautioned us that what they were about to do was extremely experimental.

They had only performed this kind of procedure, using CO2 gas, on two other babies at the hospital, and the procedure had only been done ever about 60 times in the world. He said they had never used CO2 to removed amniotic bands before. They were also originally only going to have to make two small incisions in my stomach to perform the surgery, but because the banding was so severe, they would have to give me a C-section type of incision, flip out my uterus, and operate from the back of the uterus through two different incisions. They also told us that, even though our baby was extremely young and one of the most serious cases of ABS he had seen, he and the other doctors felt very confident they could perform a successful surgery. However, because the surgery was so experimental, they would have to convene an 8-person fetal surgery board in an emergency session just to approve the procedure. He felt confident that it would be successful, though.

Finally, Dr. Belfort chastised me just a little for eating breakfast which would delay when they would be able to do the surgery. I didn’t think they would be able to get us in for surgery the same day, so I had had breakfast, and you’re not supposed to have surgery for at least 8 hours after eating. But, in the end they said if we wanted to move forward, they would schedule surgery for later that day. After they talked to us about all of the many complications that could happen, they asked us to take some time to discuss the surgery before making our final decision. Rory and I just looked at each other for a little while without saying much. We both just knew we had to go forward. We told Dr. Belfort we were in, and we wanted to do the surgery. He also asked us if we would be willing to give them permission to publish this surgery in medical journals since it was so groundbreaking. Rory and I were very excited for the chance to help other couples in similar circumstances give their babies a second chance. We were excited to be involved in this pioneering step for modern medicine.

The surgery was scheduled for about 3 that afternoon and I was admitted into the hospital. A parade of nurses and doctors visited my room, each telling me their perspective on what I was about to go through. I signed more forms than I could count, each telling me that my imminent death or my baby’s death was a real possibility. They told us that the hospital was just covering their bases, and the probability for complications was very low, but the more times they went over the potential issues we could face, the more real it all seemed. After everything was signed and all warnings given, I laid there in my hospital gown waiting for surgery. Rory and I had a feeling of peace and confidence with each step we took. We knew that going forward with the surgery was our baby’s best chance and we couldn’t turn our back on our little guy.

It was at this time that that we decided to name our baby boy Kai because of the meaning of the name. It stood for strength, and we felt that he had he was our fighter and would overcome this trial that he was faced with so early on in his life. Despite all of the reassurances I felt, about an hour before surgery, which was delayed until 5, all of the potential side effects and consequences of the surgery I had heard about throughout the day caught up with me. I began to get really nervous. The nurse came in and told us that I would be taken to the operating room in a few minutes and then she left. I turned quickly to Rory and asked for a priesthood blessing. Rory then gave one the quickest most straightforward blessings I had ever received. I was assured that Heavenly Father was in control of this surgery and that we were doing the right thing. I felt immediate peace and confidence that I and my sweet baby were going to be just fine. I also felt an overwhelming reminder that this surgery was not just for me and Kai, it was for many other babies that would be in Kai’s situation. I think I actually saw some of their beautiful faces.

The nurse came in and began to wheel me out to the operating room.The anesthesiologist asked me to breathe through a mask for a few seconds. Next, I woke up to Rory’s face and several nurses scrambling around me. The surgery was over. Rory told me that everything went so well. I was hooked to tons of tubes and wires. I could barely move. I was in a lot of pain, but I was happy that my baby was ok. I was also happy when the nurses brought me some pain medication. Rory was right there by my side ordering the nurses around to make sure I was taken care of. He was so happy to see me ok and conscious.

Days 3 through 6: Waiting in Houston

Throughout the next few days, the nurses visited me every few hours to check my vitals and give me medication. Sleep was erratic at best, and I was still trying to overcome a lot of the pain. It was hard for me to move much in the first day or two, but through the help of the nurses, I started to be able to move around a little. The scariest moment was the night after the surgery. I had the worst pain I had ever felt in my life, and I thought I was going into labor because I started having contractions. But, the staff was able to help me through this moment, I was able to calm down, and everything stabilized. It was not time for Kai to come into this world. We didn’t go through everything to have everything fall apart, and God blessed us to have this moment pass without further complications.

One nurse that had helped some patients with similar cases as ours mentioned that the doctors would probably want me to stay there in the hospital until I delivered. I hated the idea of having to stay two or three months in a hospital so far away from my family and friends. However, we wanted to do what was best for Kai so we decided we would make that sacrifice if necessary. Rory and I, along with family, started to figure out how it would work if I had to stay in Houston and began making plans. This included unfortunately quitting my job. However, on the bright side my parents said they wanted to come visit me, and my mom was even arranging to stay out here for a while since Rory would have to go back to Utah.

Rory spent his time during these days trying to do homework, but mostly just updated family and friends on what was happening, ordered the nurses around, worried about me and Kai, and tried his best to acclimate to hospital food. Luckily for him, it was his fall break the next week, so he had less pressure to complete his assignments. He was also very fortunate to connect with his cousin Paul and his beautiful wife Ashley. Paul was a medical student doing his residency at the medical center just a few buildings down from where we were. Rory asked if he could go to church with them on Sunday, and they agreed to pick him up Sunday morning. It was great for Rory to have a little normalcy in attending church and being with family. Paul and Ashley were very accommodating and invited Rory over for a meal after church. They also visited me later that night with lots of food and even gave Rory keys to their car in case he needed to use it. We were so overwhelmed by their kindness and generosity.

Day 7: The Trip Home

Finally, it was Monday morning. We would have the final ultrasound where they would decide if I needed to stay or if I could go home. Rory and I woke up feeling very strongly that we were going home that day. We almost had to keep ourselves from packing because we felt so sure we were leaving. We went into the ultrasound midmorning. The doctors were so impressed with Kai and how he was doing. Despite having lost a lot of amniotic fluid during and after the surgery, the fluid levels had risen again to an impressive level. The swelling in his left foot was also going down, and his heartbeat was still strong. The doctors said we could go home, but I would have to be on bed rest until Kai was born. With a fond farewell and many instructions the doctors discharged us and we began to prepare to go home. We were all a little nervous about how the trip would affect me and Kai, but we trusted our Father in Heaven and knew he would watch over us the entire time.

It was raining really hard during the ultrasound, so we scheduled the latest direct flight we could for that day. We packed up all our things, traveled to the airport, found me a wheelchair and were able to make it through security. We found out that many flights had been delayed or cancelled due to the intense storm that was traveling east over the country. However, it passed by Houston by that time, and our flight was one of the fortunate few that was not delayed. Despite some pain that resulted from all the traveling, we made it home with no issues, and we were so relieved to be with family again.

Our little family was ok. We gave our little Kai a second chance. With the many blessings of our heavenly father, prayers from family and friends and amazingly gifted surgeons, the possibility to meet our sweet boy in this life was real. Heavenly Father never left our side that day and still hasn’t. He is still watching over our fledgling family, and we are so grateful for His kindness and love in giving our baby a second chance. We are so excited to meet our little fighter!

Kai is 30 weeks right now and still cooking 🙂

6 thoughts on “Kai’s story- Fetal surgery at 19 weeks

  1. An update would be amazing! I’d love to hear how well everything came out, 30 weeks in December means Kai should be a few weeks old now?

  2. I would say you are really lucky except the part that you had to go thru all this. Your were lucky to get great team of doctors. They even explained to you the ABS part. we were always told everything is fine during every ultrasound visit and finally my baby came out which really shocked us. I dont know whom to blame …i dont know if we could have done anything to prevent it….

    Did your doctors tell you why the uterus was collapsed?

    May God always be with you. Wish you all the best.

    1. I’m happy to hear you were aware of what your baby has/ had and you could get help advise and help at this stage already . But you’ve have had a lot of hard decisions to make but very blessed too!
      My daughter was born August 13, 2013 with ABS it affected her feet and one hand. nurses and doctors didn’t tell me anything or what it was until she was 2 days old. But seemed like no big deal. After I was told I researched it and found out we aren’t alone.

    2. Thank you for your blessing 🙂 I have just gotten clarification on what the doctor meant about my uterus collapsing. Apparently, he was referring to the amniotic sac. It was a miscommunication that I need to fix in the story.

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