Lauren's Story

On November 4, 2010 I came home from work and took a pregnancy test. I had one under my bathroom sink because we had bought a few in the past. I look down and it has that little plus sign. I was in shock! I couldn't believe it. Brandon and I had been trying to get pregnant for 2 1/2 years and I am finally looking at a test that was telling me it is finally happening! I called my sisters and felt like it was a dream. This was something I was wanting for so long. I decided to take another test because I was scared I was getting too excited and it turns out to be a misreading or something. The second test came out positive. I called my husband, since he was still at work, and he was ecstatic. Brandon is such an amazing dad already with Halley but he definitely wanted a child of his own. I quickly made an appointment with a new doctor’s office, since the one I went to when I was pregnant with Halley was in Irving and I didn't want to have to drive far from work if I had appointments mid-day. On December 22, 2010 I had my first sonogram. It was amazing. I cried yet again, I was crying all the time because I was so happy. I was so happy that things were good. My pregnancy with Halley was extremely difficult being that I was only 14 when she was conceived. Anyways, that day was perfect. I remember walking into the small room with Halley and Brandon and seeing our little baby on the screen. The sonogram technician was so friendly and made us pictures with captions saying "Hi mommy and daddy" and "Hi Halley".

Every day we grew with more excitement. I was eating more, getting crankier, and could hardly move because I wanted to be asleep or laying down every second I could. I continued with my doctor appointments and finally she gave us the date of the very important sonogram to find out the sex! March 9, 2011 was the day we were waiting for. It couldn't come fast enough. I walked into the doctor's office with Brandon, Halley, Ruth, and Utah (Brandon's parents). This was going to be their 1st non-step-child and they were overjoyed. I really don't even think I am using enough "happy" adjectives to describe our emotions. Okay, we pile into the room and once again saw our baby on the screen. We saw the heart, brain, cord, hands, feet, and then... Baby Girl :D. Another little girl for me. I, of course, cried again and think I even saw Brandon wipe away a few tears.< 3 We leave the doctor's office and Halley couldn't wait to go shopping. We went to Babies R Us and picked out her crib bedding and a few adorable summer outfits (I was due July 8th).

The next day I went to work as normal. Then my phone rang and the screen showed it was my doctor's office. It didn't seem too odd to me, so I answered. It was my nurse. She told me that the sonogram tech was a little worried about our little girl's legs. She said the doctor was shown the pictures and she wants me to see a specialist the following week. They had already made the appointment. My heart dropped, but the nurse said not to worry it may be something minor like her having bowed legs, or it could be that she had a fracture or possibly her legs stopped growing and that we wouldn't know until we met with the specialist. Their equipment was like a Mercedes Benz to their Ford or something like that was the analogy she used. I then cried and became frantic. My family reassured me that it is probably nothing major and doctors usually just like to take extra precautions.

On March 21, 2011 Brandon and I walked into a perinatologist office, Dr. G. Little did I know that walking into that office would haunt me for the rest of my life. We were there for probably 3 hours. When we got into a room, a huge one compared to the one at my doctors office, we were smiling and having a good conversation. This time we had a male sonogram technician. He was nice. He slowly went over her head, brain, and heart, counted her fingers, then moved onto her legs and got quiet. And when I say quiet, I mean silent. He did not say a word for the next 20 minutes that he was taking pictures. He then stood up and told us the doctor would be in with us shortly. Well, about 45 minutes went by and no doctor came in. I looked at Brandon and told him I knew something was wrong, something just wasn't right. What was taking so long? I figured, okay she is bow-legged, so what!? That is fixable. We sat there, well I laid, and watched the light changing from under the door of people passing by until finally we heard a knock. Dr. G. came with no smile, no "hi, how are you". He came to me and said that he would like to take a quick look for himself. So on goes more of that cold gel they use and he looks for maybe a minute, if that, and then gets up and walks to a counter where he lays my file. He then starts asking me if everything was okay with my 1st pregnancy. Finally, he stops and sits down next to me, looks me straight in the eye and says "Your daughter is going to die".

I think I went into complete shock. I really just could not comprehend what he had just said to me. He went on to say that our daughter had a lethal form of dwarfism, Thanatophoric Dysplasia, in which she would most likely die before birth, or in the process of me giving birth to her. He said there was nothing we could do, and there was no need to run any more tests, but he will make a follow up appt in 3 weeks. He gave us a minute to absorb it. I am positive he must have been saying something else to me, but I could no longer hear. Everything was a blur, and tears were pouring down my face. I remembered sobbing in Brandon's arms and then the office assistants getting us out the back door into the hallway so we wouldn't have to face all the happy pregnant mothers in the front of the office. I honestly just could not understand. I started calling and texting my family. They did not understand either. Some said that Lauren was just small, that we have a lot of short people in our family, the doctor must have been wrong. No one could wrap their heads around what the doctor was telling me, it just could not be true. I remember coming home and wailing into my husband's arms - Falling into them, crying so hard I could not breathe. How could a doctor be so cold, so unhelpful, we are supposed to have modern technology and advances in medical science, yet my child was going to die and there was nothing I could do about it? I cried non-stop for hours. I hid in my room from Halley so I would not upset her. I cried in the shower, in the bed, watching TV, while eating. I stopped taking calls and checking my phone, I couldn't do anything, my heart had been broken.

The following day I was torturing myself by reading about the condition the doctor advised me of online, and finally called and spoke to my nurse. I told her I wanted a second opinion, I just couldn't give up that easily. I was told that Dr. G had been in the medical field for many years, knows what he saw, and the abnormalities were still there, even if I did not want to believe what I was told, and they would not go away. I was also told that the 3 week follow up appointment was set to see if Lauren would still be alive, because they assumed she would not be; this was another horrible blow. But they still set me up with another referral to another perinatologist. On March 23, 2011 I met with Dr. T. At this appointment my in laws and one of my sisters were able to join Brandon and I, so we would have support and they may be able to ask some questions since Brandon and I were still in shock and devastation. It happened all over again, another sonogram tech, another smiling face, and then silence. Dr. T came into the office and spent more time examining me and Lauren himself, which I was so grateful of. He told us that he does not believe Lauren had Thanatophoric Dysplasia, but maybe Osteogenesis Imperfecta, in which Lauren has a chance at survival but would have medical needs. He stated he would have to do some research and would have to continue to monitor us. We left the doctor's office with little hope, but decided we would stop buying baby items until we knew for sure.

Then on March 29, 2011 my Dr. T. thought it would be best to get an amniocentesis done, even though I rejected at the very early weeks in my pregnancy, so we could rule out a few things. I was so scared to have the procedure done, but knew it was something we needed to know, we needed answers. The amnio reported there were no chromosomal abnormalities. I got a call from Dr. T.'s office that they wanted to send off the DNA to get a genetic testing done with John Hopkins Hospital, the only problem, they do not work with my insurance, and the cost would be $2,000. We just could not do it financially, and we did not want to ask family for help with the costs. A friend suggested that some of our friends and family would pull together and pitch in the money. It was so generous for people to think like that, wanting to help us, and we felt loved, but they were not able to tell us that any type of results or answered would be guaranteed, they would not know until they see. Brandon and I discussed it for a long time, but chose not to rally up money to get the tests completed. Dr. T.'s office found an alternate solution; they found a company they could send the DNA to, to get a small group of testing done for genetic mutations. They also send off the fluid, some of my blood and other lab work to a company that was able to perform a genetic analysis to test for 3 disorders. We received the results back with great news. The mutations tested for from the DNA sample were Thanatophoric Dysplasia - Type 1 and 2, Achondroplasia, and Hypochondroplasia. None of the tested mutations were detected. There was a huge sigh of relief. I remember Dr. T. was in high spirits as were we once we were told the results. Dr. T. had one of his partners in the office that day and wanted him to have a look at me himself too. After he looked and they had a brief talk, Dr. T. stated that he no longer believed it was Osteogenesis Imperfecta after doing research, looking at the changes over some time, the results from the testing, and consulting with his partner, he now believed it was Kyphomelic Dysplasia, which is another serious condition, but Lauren could survive. Dr. T. was very optimistic, telling us that we were able to start buying baby necessities again, plan, and get ready for our baby. Again we were happy, having issues we can fix were something we could work with; we just wanted our daughter to live, and to be in our arms.

Dr. T. also wanted to send all of my lab work, DVDs of ultrasounds, and pictures of Lauren over to International Skeletal Dysplasia Registry in California. They would review everything for free and would be able to give us more information on Lauren's condition. We agreed and it was sent off. We were also told Lauren may come early, so we told our families and the start of planning the baby shower was in full motion. At the end of April we got our maternity pictures taken, which came out beautifully. Then on May 14, 2011 we had my baby shower. It was a lot of fun, and we had gotten so many gifts. We even had Lauren's nursery completely finished by then so we were able to have her room open, and we could show all of our guests! We were scared, worried, stressing on the outcome, but were confident in our baby girl.

I continued to see both of my doctors every 2 weeks to check on my health and on Lauren's. On May 31, 2011 we got some startling news from the International Skeletal Dysplasia Registry, they wrote Dr. T. stating that Lauren did not have Kyphomelic Dysplasia; she had Campomelic Dysplasia. This was another blow. They letter was extremely cruel. They stated the following: "The Micrognathia, shape of head, probable cervical/thoratic kyphoscoliosis, bent chevron bones and the hypoplastic phalanges and club feet are very suggestive of this diagnosis. The prognosis is very grim and while there are some long term survivors, they do very poorly as a generalization. Thank you for allowing us to be involved in this case, we are very sorry for the family." Yet again, my heart was broken; I was so tired of the emotional roller coaster! One doctor’s appointment we would come out smiling, and the next I was wiping tears.

Dr. T was very supportive as always. We continued to check Lauren's growth and try to make a plan for when she was born. Despite the prognosis that was given, we were told the biggest worry was if Lauren would be able to breathe on her own. Her lungs were developing on track, but because she had such a small chest, it would restrict her breathing. We toured the NICU at the hospital I would be delivering at and met with the neonatologist that would be caring for Lauren. Both of my doctors were continuously sending the NICU updates on how Lauren and I were doing so they would be able to plan for her as well. I was due July 8, 2011 but Dr. C thought we would plan for me to get induced on July 1, 2011. However, that changed and based on the amount of fluid I was retaining, that changed to June 24th. On June 15, 2011, I had both of my weekly doctor appointments scheduled. I saw Dr. C 1st and then onto Dr. T. When Dr. T measured Lauren’s growth, the thought her growth had slowed in the last couple weeks but felt like that was a flag for concern and told me that it was his recommendation to deliver earlier than the 24th. He stated he would call Dr. C and I would get a call later to advise me of my new delivery date. Lauren was breached for the last couple of weeks, so we were aware I would be having a C-section, which we decided would be the best decision even if she wasn't, so it would be less stress on her.

I didn't receive the call until the next morning; I was told I would be delivering the following day, on June 17, 2011, at 37 weeks gestation. I remember being scared but so ready to see my baby girl. I finally went back to the operation room around 6:00PM. I can remember crying as I was lying there, being terrified and sick to my stomach. The room was filled with people ready to care for me and those ready to care for Lauren. There was a different neonatologist in the NICU that day, she came over and told me that her and the team would do everything they can for Lauren. At 6:10PM she was born. At first she wasn't crying, but soon she started - the sweetest sound a mother could ever hear. Her cry was extremely soft but I was thankful I heard it. She was 4lbs 11ozs, bigger than we expected, and was 13'4'' long. She was immediately whisked away to the NICU. That night no one was allowed to see her, not even Brandon. They were trying to get her situated and comfortable. We could only call for updates. That night she was on 100% oxygen. The following morning, she went down to like 50%. I wish I would have kept track of all the numbers but at the time, it did not occur to me. June 18, 2011, family could start to see Lauren. Still, I could only see pictures. She was so beautiful though. Eventually I was up and walking around. The pain I was feeling was worth it to me, so I was able to get to the NICU to spend time with her.

They were taking x-rays and monitoring her, but they recommended us decide to move Lauren to one of two hospitals, where there was a geneticist on site to assist us in her care. After speaking to family, we chose Cook Children's in Ft. Worth. On June 20th The Teddy Bear Transport team came to MCA and loaded her into the ambulance. We were confident that this was the best decision. Each day there was several changes with her health. Her neonatologist at Cooks had horrible bedside manner. I really didn't like him. I remember the 21st he brought us into a conference room and told Brandon, Halley, and I that it was his recommendation that we put a Do Not Resuscitate order in, he figured there would be no chance for survival. He was not the geneticist, she was out on vacation until July 5th, so if he was not familiar with her condition, how could he tell me that. He sobbed together, but chose not to complete that at this time. We wanted to wait until we could speak to the geneticist to get more information. There were several people that came in and out to talk to us, examine Lauren, and tell us new and improving information. On June 24th I got to experience changing her diaper for the first time, and later that night got to hold her for the first and only time while she was alive.

Lauren was thriving, making great strides, shocking the doctors and nurses that were caring for her. She got down to room oxygen, but still was needing help with the machine. They were still giving her x-rays, doing testing, and giving her medicine, but she was now able to eat all the milk I was bringing in, and was more awake each day. Every time she heard Brandon's voice she would open her eyes, peaking really, and would clench onto our fingers. Each morning Halley went and read to her and it was amazing to see the bond that was being created. We would talk to her, read to her, sing to her, rub her, smile, and truly made the best that we could, despite the not so good times. On June 30, 2011, Lauren's progress turned around, she went back on more oxygen and needed more help with her machine. They couldn't figure out why. They had to test her blood oxygen levels more frequently again. That night, they told me that she needed more help, and by the next morning, they may more her to an oscillator ventilator. On July 1st when we came, she was indeed on one, and moved to another spot with more room since this vent was bigger. That night we went home around 11pm.

My cell phone ringing at 4am woke Brandon and me up. Instantly we were terrified. Brandon answered and told me to get ready; we had to go to the hospital. I kept asking him to tell me what the hospital said. He told me that just said there was a problem and we needed to get to the hospital as soon as possible. We ran out the door, leaving Halley with my step-dad and started to speed to the hospital. We called his parents and told them something was wrong, we just didn't know what, and they were on their way as well. Half way to the hospital our phone rang again. The hospital was calling to see how far away we were, if we could get there any faster. Brandon told them we were speeding, trying to get there as fast as possible. We drove in silence, with just the sounds of me crying. Finally, we had arrived, running through the hospital emergency entrance, since that was the only way to get in, showing our wrist bands to the guards, up the elevator to the 2nd floor, and called the NICU telling them we were there to see Lauren Autry. The doors opened, we walked in, and there was nurses standing around. I remember walking as fast as I could, briefly looking at them, around the corner, I did not wash up or put on a robe, running to where Lauren's new location was. I saw group of nurses huddled around her area, the horrible blue screen, and I just started crying, and trying to get there faster. Suddenly, I was stopped. Her doctor was there, and had grabbed my arms. He was trying to talk to me, but all I could do was try to get to Lauren.

"I'm sorry, she is gone." That was all I heard. I started crying even louder. I rushed over and the crowd of nurses moved aside. In the rocking chair near her bed, the nurse that was watching her that night, ironically named Lauren as well, was rocking Lauren in her arms, and she was crying. As I walked to her, she stood, handed me my precious baby girl, and told me that Lauren was doing so well that night, that it shocked her that this happened. Lauren was dressed in a soft pink dress with a white headband. She was free from her tubes and was so tiny and precious in my arms. Brandon and I were crying, examining her tiny, perfect body, and passing our daughter back and forth. His parents showed shortly after, and got to spend time with us as well. The Chaplin came, prayed, spoke to us, and we also got to speak to the doctor. He stated she had gotten a hole in her lung; they attempted to pull out all the air, but were unsuccessful. Our daughter, Lauren Isabelle Autry, passed away on July 2, 2011 at 4:16AM. She was 15 days old. The causes of death listed on her death certificate was Congenital Skeletal Dysplasia of Unclear Etiology. We would later learn that the International Skeletal Dysplasia Registry confirmed her condition was Campomelic Dysplasia.

Planning her funeral was the most horrible experience. We had no idea what we were doing. Choosing the best casket for her, a beautiful area overlooking water and under her tree, choosing what she would wear, it was all just too much. Needless to say, we were not sleeping, hardly functioning, and constantly crying. Our hearts were broken into tiny pieces and we had no idea on how to pick up the pieces. We held her funeral on July 8, 2011. We had a 2 hour viewing before the service started. We had a slideshow going of all the pictures we took of her, tons of flowers people ordered for her were surrounding her, and the speaker even wrote a poem specifically for her. We walked to her spot, a prayer was said, and we watched them lower my baby girl into the ground and slowly cover her with dirt.

Sometimes, everything is a blur. After trying for a baby for so long, this was something that we definitely did not expect. I will always cherish the time she spent growing inside of me, and the 15 days we got to spend with her. In our house we will continue to speak of her, remember her, and love her. She has made our family stronger and taught us how strong the bond of love is. Lauren is forever in our hearts and hope to continue to grow our family with her memory strong in our hearts. I hope there is a day I will get to see our precious daughter again; I cannot wait to hold her in my arms again; I will never let her go.