It was a MIRACLE.’: Mom spends 9 days with daughter born with Alobar Holoprosencephaly ‘We came without a car seat because we were told we wouldn’t take her home. - Bliteoc

It was a MIRACLE.’: Mom spends 9 days with daughter born with Alobar Holoprosencephaly ‘We came without a car seat because we were told we wouldn’t take her home.

3 months ago 136

“Before I tell my full story, I must first say it is separated into two parts. There is the person I was before receiving the news that changed our lives forever, and then there is an after. On August 17, 2020, I entered what felt like a surreal world. Before I delve into that day and explain the full circumstances and the many important events thereafter, I will first tell you a little bit about my background and my family and who we are.

I am a 28-year-old mother and Coast Guard spouse currently living in the state of Texas. My husband is also 28, and we have a five-year-old daughter named Riley Grace. We are a super silly and fun-loving family, and we are also very close. God is the center of our family and I think that is what keeps us grounded and thankful. We haven’t always lived in Texas, but we love it here. My husband and I are originally from the panhandle of Florida. We really love the Gulf Coast and the south, and Galveston, Texas satisfies those things, so we were excited when we found out we were getting stationed here in February of 2020.

Being a military family, we move around a lot and it keeps us on our toes. I have been working on pre-nursing classes for what feels like forever, almost 10 years all in all. In 2020, we knew wherever we were going to get stationed next would be the place where I would be able to attend nursing school. In February 2020, I searched for nursing schools near Galveston, Texas as soon as we got our orders. I found a school called UTMB that offers a traditional BSN program and something about it made it jump off the page when I was searching on the internet, and I knew this was where I was going to go to school if I was lucky enough to get into the competitive program.

In April of 2020, several months before we had to move to Texas, we were surprised to find out we were pregnant with our second child. We hadn’t planned to conceive another child at the time, but we were so thrilled and thankful we had the opportunity to grow our family. My husband and I immediately began planning for the big changes that were coming our way. I can remember us being so overjoyed and optimistic for the future. I started growing quickly, more this time around than when I was pregnant with Riley, and the morning sickness was intense and almost unbearable at times. But I knew it was all so worth it to have my second beautiful baby.

When we moved to Texas, I was about 16 weeks pregnant. It was at the height of COVID, and we had just moved to a completely new area, so it took me a while to find a new OB for my prenatal care. I was able to finally have an appointment, an ultrasound, at around 18 weeks. Baby was so very active and we were going to finally find out the sex! We found out that day we were having a precious little girl. We decided we would name her Allison Mary, after my grandmother, Alice, and my husband’s grandmother, Sylvia Mary. Both whom had passed recently. Her name was perfect, she was perfect, and everything was all coming together. We held a gender reveal party at our new house to surprise our family on social media and it was adorable. My husband and my girls were everything to me and we were so grateful and excited.

On August 17, 2020 I had my anatomy scan appointment scheduled. I was already 23 weeks along (more than halfway through the pregnancy), which is far along for this specific ultrasound, but due to COVID and the fact I had recently moved and the OB I was seeing had few available appointments, this was the only time I could do it. That morning I drove to my OB office by myself and my husband was at home with our older daughter. I was so excited and anxious to finally see my sweet girl and see all her little body parts and revel in how much she had grown in my belly the past 6 months.

I got to the appointment and I laid down on the table to have the ultrasound. It was just the tech and I in the room. I reached for my purse and almost fell off the table to get my phone so I could record the ultrasound for Jeff to see since he couldn’t be at the appointment. A large sign hung below the screen that said in all caps, ‘No recording or pictures in this room allowed.’ So, a little embarrassed, I hid my phone under my thigh. The ultrasound began. The tech and I engaged in small talk, she would ask me a question about my life and I’d answer. Then she would quietly scan for a few moments. ‘Do you have children?’ I asked her. ‘I have two girls,’ she replied. ‘Oh how awesome, I’m about to have two girls as well!’

She continued scanning. I asked her if everything looked all right, and she replied, ‘Honey, I just started and I have a long way to go.’ And I replied with, ‘Oh, I’m sorry. I’m just curious.’ For the next 15 minutes, I just decided to sit quietly and let her do her job. She continued scanning and would label her liver, gallbladder, lungs, arms, legs, hands, feet, heart, etc. Allison’s little heart was beating away, about 160 BPM. After the ultrasound was finished, I cleaned my belly and sat for a moment. The ultrasound tech
sat at her computer, charting and taking time to get all the pictures together. Then, what she would say next would be the beginning of a nightmare I still have not awoken from.

‘I see something I’m concerned about, and I think you need to go to MFM in Galveston ASAP.’ At first, I thought maybe it was procedure to have any type of little concern double checked, so I tried to think this wasn’t something that could be very serious. Still, my heart started racing and the worry rushed over me like a tsunami. I asked her exactly what she saw that caused her to have concern. ‘The structures of the brain and the face are concerning, but I am not a doctor so I can’t tell you exactly what I think it is. You need to go over to maternal fetal medicine, which is a high-risk OB in Galveston. I’m going to call them now.’

She contacted MFM in Galveston and she said to go there. I was so confused. ‘Do I have an appointment? What time do I need to go there?’ She told me to just go there now and they would be waiting. She gave me directions, and she let me out of the room and I didn’t check out at the front desk, she just told me to go. I got to the car and immediately burst into tears. I FaceTimed Jeff, and he answered smiling and asked if I was coming home, then he saw my face. He asked what was wrong, and
he said he would come and get me. I said I needed to go to Galveston because the ultrasound tech said there was something that concerned her. He began to look very worried. He asked me if I could drive home, and I said yes. He told me to come home and he would drive me to Galveston.

The drive to Galveston was long and we were both pretty quiet. We didn’t want to get too worked up because we didn’t know exactly what was going on. We both were thinking the same thing though; if there was anything wrong with our little girl, we would both do whatever it takes to raise her and love her and fight for her. No matter what the doctor said, we were going to love our daughter no matter what. Jeff dropped me off at UTMB Galveston, he and Riley would wait until the appointment was over, we didn’t know how long it would be. We did not know this would be the longest and most excruciating day of our lives.

I get the MFM and check in. I sit, alone, in a waiting room with most of the chairs taped off that said, ‘Out of service, for your safety.’ I find a chair that isn’t taped off, I sit with my mask on, finding it hard to take a deep breath. I look down at my Fitbit, and my pulse is about 125. I am so fearful and worried, but to God I pray for peace that passes all understanding. I pray for supernatural strength. I pray that the Lord that is the same today, yesterday, and forever would be with me. I was not alone.

The high-risk ultrasound tech calls my name. I get up and follow her down an empty hall. She asks me how I’m doing, and I say, ‘I’ve been better.’ She pats my back and leads me to the dark ultrasound room. ‘This ultrasound will be even longer than the one you just had, it will be very in depth, so if you need a break at any point just let me know.’ I agree and lay down. The 2-and-a-half-hour ultrasound began. I was still concerned and scared, but the tech was so calming and seeing Allison with my own eyes for so long gave me peace.

After hours of her being poked and prodded with the transducer, she was getting feisty. She would constantly kick back when she pressed hard on my belly to get just the right angle. It made me giggle each time. I stared at her little hands and feet, counting each finger and each toe, so beautiful and perfect. The scan she did on her heart was very thorough. I could see each chamber of her heart, and each valve opening and closing, looking like hands clapping. It looked amazing to me. When she did the scan on her head, I wasn’t sure what I should be looking for when it came down to it. I just prayed. Towards the end of the ultrasound, a doctor came in to see how it was going. He introduced himself and talked to the tech for a while quietly. He then said he was going to talk to his faculty and then they would be back, and we would talk.

Ten minutes later, three doctors enter the room. A new doctor introduced himself, he was one of the high-risk doctors at MFM. The first thing he asked was for the ultrasound tech to put up the picture of Allison’s head up on the screen. He then asked me what I knew. I told him the ultrasound tech at my anatomy scan that morning told me she had a concern. The doctor acknowledged me and then paused, took a deep breath, and looked me in the eyes. ‘Your daughter’s forebrain unfortunately never developed as it should. The right and left hemispheres never divided like they were supposed to. She only has pieces of her brain stem and cerebellum. This condition is called holoprosencephaly. Most of the inside of her skull is filled with fluid. There are three types of this deformity, and your daughter has the most severe form, called Alobar Holoprosencephaly. Unfortunately, this is incompatible with life.’

I hear him say those words and immediately I am no longer present in my own body, I am looking down on myself from the outside in. I see myself, alone in a room with these strangers. I immediately gasp for air, as if I have been under water holding my breath for 10 minutes. I feel an immense wave of pain, sorrow and confusion come over me, as I no longer see the world in color. I felt as if reality was no longer real. I feel Allison kick in my belly, as if she also felt the wave of sorrow I was feeling. I ripped my mask off so I could breathe, and immediately I said I was sorry and attempted to put it back on and they all said, ‘No, leave it off, you are okay.’

I looked at the doctor, so broken. I asked him how this could have happened. He explained to me this is very, very rare. He assured me there wasn’t anything I had done to cause this, and there wasn’t anything I could have done to prevent it. It is an anomaly that occurs in about 1 in 16,000 pregnancies. He said what caused this deformity was most likely a chromosomal defect that happened during meiosis at the very beginning of her life. I knew there were chromosomal anomalies that could cause developmental problems from my pre-nursing studies, however when you’re in a situation where it’s happening to you, it is very hard to comprehend. I kept thinking it must be a mistake. I have a 5-year-old that is living without any chromosomal or anatomical defects.

The doctor goes on to explain Allison has the worst kind of deformity to her brain, and they cannot do anything about it. No surgery can fix it. He said some early detection tests (like the QUAD screen I did at 18 weeks that came back completely clear) cannot detect certain chromosomal deformities, and unfortunately in some cases, mothers must find out once their babies have grown in their bellies and the deformities have fully taken form. He said Allison will either die in utero, she will die during birth, or she will be alive for just moments before passing in my arms after she is born.

After sitting in the ultrasound room, weeping and in shock for about 30 minutes after being told the news, I knew Jeff was starting to worry. He had already been waiting outside with Riley for 4 hours. I tried to stop crying for a moment so I could text him back and let him know I was coming out soon. I hated so much that he couldn’t hear for himself what was going on. I asked the doctor if I could call him in 30 minutes when I was with my husband and he could explain the details to him. He agreed. I get outside finally and I am not able to mutter any words to my husband, I just shake my head. We get in the car and head home, as Allison jumped in my belly.

The minutes, hours, and days following the news we received that day are a blur. The amount of tears, long talks, and prayers we had are countless. We had to tell our families about what was going on. We needed them to know so they could lift us up with support and love. Once we did break the news to them, we felt a weight lifted off of us. It was very emotionally exhausting having to repeat such terrible news over and over. But we had to. The most surreal part of the process was I was still very much pregnant. My belly grew and grew, Allison would constantly have hiccups, roll around and wiggle all the time. We processed the grief very slowly, but we knew we still had to enjoy the time with Allison, however long it was.

In September, we had a procedure done in order to have genetic testing to see what it was exactly that Allison had. We found out after some time it was a combination of unbelievably rare chromosomal defects that had caused her brain deformity. When Jeff and I spoke with the genetic counselor, she was honestly stumped and couldn’t even explain how she was still living. At this point I was about 30 weeks along. My husband and I were still trying to process all of this and enjoy our time with our girl. It was a miracle she was still alive. At UTMB in Galveston we met with a neonatologist who was also in charge of all neonatal hospice. The fact we were in an area that had such an incredibly specific program for us was mind boggling. The neonatologist not only answered all of our questions and counseled us on what to expect, but she also offered us so many gifts like books and information for our specific situation. It helped us so immensely and took some of the stress of the unknown off our shoulders.

We still had to prepare ourselves for anything. Allison could pass at anytime and I had to know the signs to look out for if that happened. She could live for moments, or possibly hours, and there was a very slight chance she could live for a few days, but it was very unexpected. On November 13th, my water broke at home and my husband and I rushed to the hospital. We were both very anxious, but for some reason we were also calm. I can’t explain that calm, but it was there.

Allison was born via C-section on November 14, 2020 at around 3:30 a.m. My water broke at 35 weeks and I gave birth to a crying, sweet, little 5 pound 15 ounce angel. She was the most beautiful angel I have ever seen. So dainty and pretty and sweet. With the faintest little cry. We were shocked she was alive and that we got to actually meet her. We came to the hospital without a car seat or any supplies because we were told we wouldn’t be able to take her home. Well, we had to have a family member bring us a car seat to the hospital because we got discharged and we took our baby home. That was an absolute miracle. We had hospice care bring us supplies like an oxygen machine, feeding tubes, etc. The day we took her home was incredible. We drove home with her hooked up to the machines in the car with the sun shining down on us. Allison got to go home with her family.

We took so many pictures, sang songs, snuggled, and made so many memories with her while she was with us. I don’t think it sunk in what was actually happening and what was to come, but we were along for the ride and we held on tight. We would talk to the neonatologist on the phone every once in a while with questions and concerns, and she would lovingly nudge us to remain strong for the inevitable and to remember Allison could go at any time. She told us what to expect when it was Allison’s time to go. I don’t know what we would have done without that information. Even though we knew it was coming, there was still no way to fully prepare for the day she left this earth. Her vitals slowly started to decline one morning as we were doing our routine with her that happened every two hours. We would check her oxygen saturation, feed her through the feeding tube, change her, etc. Her oxygen saturation slowly began to decline. We called the doctor and she said it was time.

We had only hours with her before she took her last breath. It was the longest day of my life. Allison lived for 9 days. She passed away on November 23, 2020, which was my husband’s birthday. The 9 days we had with her were absolutely magical. She was so alert and happy and made the sweetest sounds. She passed away in our home; I was holding her and rocking her in her nursery. After Allison passed, we laid her on the changing table to clean her up and a ray of sun came through the clouds and made her face light up. That day was a dark, rainy and cloudy day. But at this moment, her face shone like the brightest thing I’ve ever seen. I turned around and looked through the window and the sun was shining through a perfect round opening in the sky. I knew it was a sign; she was in heaven and she was in no more pain. It was the most miraculous thing I’ve ever witnessed. Our experience was so beautiful and so heartbreaking.

Several months after my daughter passed, I was accepted into nursing school at the very same teaching hospital where I gave birth, at UTMB. I almost gave up on my dream of being a nurse because the grief was so intense. I knew Allison would have wanted me to turn in that application. My dream is to work in pediatric palliative care, and one day I hope to help other families who have to face the unimaginable. I believe I gained an insurmountable amount of empathy and compassion for families and children who are diagnosed with severe conditions. We miss her and our hearts are broken, but we are also encouraged and hopeful because we know we will see her again. We are honored she chose us to be her family.”

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