By Angela Frank
Mommy to Beckham
October 26 – November 12, 2022
Brain AVM, Heart Failure
Beckham’s pregnancy was a really big surprise! A surprise we didn’t know we wanted so bad until it happened. Nick and I had been together for 5 years and were raising Brooks, my child from a previous relationship. After the initial shock of finding out we were pregnant, we were over the moon and so were our families. Brooks had been asking God for a baby brother for months, so when we found out we were having a boy, he was certain he already knew because that is what he asked God for – a baby brother. We could not wait to meet this sweet little boy.
We went to all of the appointments and had regular ultrasounds checking on growth. Everything always looked perfect, and Beckham was growing exactly as he should have been. At 30 weeks pregnant, we had a routine ultrasound and growth scan. Our doctor casually mentioned that the sonographer saw something like extra blood flow in the jugular vain. He said he would refer us to see a specialist to have it looked at, but really it was probably nothing. We made the appointment with the specialist and went on about our life, assuming this was something that would check out to be okay.
A week later we went to see the specialist. The sonographer spent a long time looking at the baby while Nick and I sat there and watched our sweet boy practice his breathing and have the cutest little hiccups. We were quite smitten with our little boy to say the least. The nurse left the room to go get the doctor and was gone for what seemed like forever. The doctor comes in the room and in a harsh tone says, “Do you guys know what’s going on? Has anyone talked to you guys about this? Do you guys know that your baby is going to die?” She went on to tell us that something was wrong with his brain, and it looked like he had a stroke and almost all of his brain tissue was gone. She said she needed to get us set up with the palliative care team through the hospital and keep everyone comfortable until he dies, expecting that he wouldn’t make it through the weekend, let alone to full term. She followed that by saying, “Don’t worry guys, you are young, you can try again right away and have another one.”
That is a feeling I will never forget. The most out of body feeling I have ever experienced. This wasn’t possible. I had done everything right. I went to the doctor as soon as I found out I was pregnant. I went to every single appointment and growth scan. I did all the genetic testing. I did the 20 week anatomy scan – and everything was always perfect, he was so healthy. Until right that very moment when the doctor said our baby boy was going to die.
They came in and did an amniocentesis right away. Nick and I were numb and trying to wrap our head around what was happening. As they were sticking the long needle in my stomach, I kicked into mama bear mode, “I know you think he is going to die but I feel him very alive in my belly, kicking and moving all around. I’ve watched him suck his fingers on ultrasounds and respond to my voice, his daddy’s voice, and the loud screeches from his wild 6 year old brother. I know you say he is brain dead but I know he is not, he responds to us and is moving all his limbs. Please don’t hurt him with that needle.”
They sent us for an MRI to see if they could see more of what was going on. Later that night we got a call from this doctor confirming that he had a stroke and most of his brain was gone. We needed to talk about the next steps. I immediately asked for a second opinion. This specialist we were sent to spoke to us in the most insensitive way and talked about our very alive baby boy as if he was already gone. I wanted someone to see our baby as the alive human being that he was; he was our child! The doctor reluctantly said she would call St Louis Childrens Hospital and see if someone would see us. That next day on a Saturday morning, I got a call from the Fetal Care Clinic with Washington University, and they wanted to get us scheduled for first thing Monday. The nurse that called us was the most caring and understanding person we had talked to, and we felt that we were headed to the right place.
Monday, September 12th, we headed to St Louis to see this team of doctors that had been put together over the weekend to take a look at our baby boy. We had an echo done in the heart lab, then went for an ultrasound and then we waited. They sat us in a room where so many doctors, surgeons, nurses, social workers all surrounded us. One of them told us, “Your baby boy is very very sick. We do not know what is to come for your little one yet. We will be monitoring very closely over the next several weeks.”
Beckham was diagnosed with a brain arteriovenous malformation (AVM) – a tangle of arteries and veins in his brain that was creating excessive blood flow, causing his little heart to work overtime, which means he would eventually go into heart failure.
Our hearts left our bodies for what seemed like forever. This was really happening. This sweet little boy that was growing so well and so so active, this little boy that his brother had prayed so hard for, may not live.
The following weeks were filled with so many scans, doctor appointments, conversations with teams of hospital staff and countless neurosurgeons. There seemed to be hope as we navigated these days and weeks. The surgeons seemed hopeful to be able to operate and potentially save Beckham’s life.
At one of my appointments, our nurse came and sat with me and asked if I had planned on doing maternity photos. I explained that I had canceled the session I had scheduled because I didn’t know if I could emotionally handle having a photo session. She handed me a sticky note and said, “I really encourage you to call these people and talk to them. On Angels’ Wings does beautiful work for families like yours going through unimaginable times.”
I was VERY hesitant to do photos of any kind. when you are going through something so traumatic, you don’t think you really want the photos because the thought of it is way too painful. The thought of getting dressed up with my family and having maternity photos done was soul crushing knowing that our baby was potentially going to pass away. But I did call them and I’m so grateful for the nurse that encouraged me to do so.
At a doctors appointment on October 25th, we made a plan for a scheduled induction the next week so that all of the team of doctors would be present to help him. However, when I went to bed on the 25th after a long day of appointments I started to cramp really bad. I thought it was too much walking that day and just needed some sleep. When I woke to my alarm to go to work on the 26th the pain was getting worse and worse. I woke Nick up and told him that I was pretty sure I was in labor. We packed up Brooks and took him to family so they could do school drop off for us. I called the nurse at WashU and she advised we drive to Columbia since that was closer and have them see if I was in labor. After being checked it was confirmed that I was in active labor and dilated to 4cm.
A helicopter was sent from St. Louis to bring me in for delivery. I made it just in time to get an epidural. Family started arriving and the room filled with teams of medical staff waiting to see if Beckham would arrive alive and if so, what assistance would be needed. After a swift 1.5 pushes, Beckham Nicholas was born, alive on October 26, 2022! They scooped him up and immediately started assessing him. He was having some issues breathing so they placed a tube to help him breathe and then took him to the NICU.
On the outside he looked like a perfect baby boy. He had movement in all of his limbs. He loved hearing mommy and daddy’s voices and would search with his eyes to try and find us. When he would find us he would lock eyes; he knew exactly who his mommy and daddy were.
A few days after birth, they were able to do an MRI to look at the severity of Beckham’s AVM. The following day they called a meeting with us to let us know that Beckham’s AVM was in fact inoperable. It was the largest in the brain that any of them had ever seen and if an operation were attempted, it would be fatal. They explained that since they were unable to operate, his heart would continue to go into failure and eventually he would pass away. I will never forget hearing those words, sitting in a cold meeting room surrounded by doctors, surgeons, nurses and social workers. “There is nothing we can do.”
We spent the following days faced with decisions that no parent should ever have to make for their child.
Beckham lived for a beautiful 17 days, feeling all the love by his mommy and daddy, his older brother and by so many loved ones. We read stories, we talked about what his silly family was like at home, how he looked so much like his daddy, how his older brother would cover him in the biggest kisses every day if it was God’s plan for him to stay on earth with us. We prayed so hard for a miracle but that wasn’t in God’s plan for a reason only He knows. We made it our job for 17 days to let this little boy know and feel how much he is loved. Beckham went to heaven snuggled up in his mama’s arms, right where he belonged.
Beckham’s life has changed ours. We may have only had him earthside for 17 days but his story, our journey and his memory are forever. He will forever be in our hearts and minds as we try to navigate this life without him. Experiencing a loss so big makes you look at your life and reevaluate what is important to you. Suddenly the materialistic things don’t matter as much, but the people and the family that we are so blessed with, that is what truly matters. I’m striving to have a better relationship with God and holding onto believing that Beckham is now with Him. I’m making memories with the loved ones that are earthside while honoring and remembering the ones in Heaven.
We just celebrated what would have been Beckhams 1st birthday. One year of navigating the grief and pain and depression. Navigating life without him. After 11 months, I boxed up his nursery and took all his decorations off the wall. Put all of his tiny newborn clothes into totes and put them into storage. We have a “Beckham” place in our house that has all of the things that were with him in the NICU, his stuffies, the books we read to him, the clothes he wore and lots of photos. Keeping his name and memory alive is very important to our family. His brother talks about him daily and wonders what things would be like having him here. He says that they have brother talks often and communicate regularly. That’s all a mama can want for her boys in this unimaginable situation.
I hope to continue to embrace the healing journey as life goes on. One day I do hope to try for another baby if God has that in our plan. Although I know that this could be a very triggering journey, I believe it could also be a very healing and beautiful journey. Not to forget about or to replace Beckham, but to honor him.
I am so grateful for On Angels’ Wings. Because of them, I have so many beautiful memories captured to look back on. After losing someone, photos and memories are all you have left, and because of OAW, we have that. Not to mention the amount of support we have received from OAW through this journey.
So to the mama that is questioning or wondering if she should contact OAW, please do it. It is the best thing that I have to look back on and remember. The memories are painfully beautiful and I am so grateful to On Angels’ Wings.
