‘Her heart’s on the wrong side.’ She held the tip of my finger. We thought we beat the odds.’: NICU survivor diagnosed with Cerebral Palsy, ‘One day she WILL walk’

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“My husband Matt and I found out we were pregnant when I was 27. We were overwhelmed with joy, excitement and fear of what parenthood would bring us. We saw Briella for the first time at 8 weeks at my first ultrasound and it was love at first sight. One night when I got off work I started to bleed very heavily. I was only 10 weeks! My husband and I rushed to the hospital to make sure she was okay. I thought for sure that I was having a miscarriage and we lost her. Upon arrival, my cervix was checked immediately and thankfully it was still closed. I went in for an ultrasound and we saw Briella was still there on the screen but this time with a beating heart. She was still with us! I was sent home on strict bed rest because of a possible threatened miscarriage we almost had. I was starting to realize very quickly how scary pregnancy really is.

Courtesy of Caroline Naif

The next few weeks went by slowly but fast at the same time. I had an ultrasound a few weeks later and we got to listen to  Briella’s heartbeat for the first time. It was magical to hear. Our next ultrasound was scheduled for 18 weeks which was her anatomy scan. We were dying to know what we were having. The radiologist said, ‘Would you like to know the sex?’ We replied with ‘YES!’ The radiologist said we were having a little GIRL! We were so excited for the wonderful news!

The next day I got a devastating phone call from my OBGYN saying the radiology report showed something was wrong with Briella’s heart. My stomach sank and I immediately felt nauseous. My OBGYN began to explain to me Briella has a rare genetic disease called: Situs Inversus Totalis: A condition in which the organs of the chest and abdomen are reversed and appear in mirror image to the normal positioning. Briella lives with her heart on the right side of her chest instead of the left also known as CHD- Congenital Heart Disease. With Situs Inversus she also has a 20% chance of having Kartagener’s syndrome also known as Ciliary Dyskinesia Syndrome PCD which affects the movement of cilia lining in the upper/lower respiratory tract, middle ear and even the fallopian tubes. My OBGYN explained all this to me and I remember thinking ‘why is this happening, why me?’ My hands were shaking so bad as I’m trying to write down everything she is telling me and asking her how to spell all of this new medical terminology so I could Google everything. I got off the phone with my OBGYN and I immediately called my husband and told him what was going on. He was at work at the time trying to calm me down. I remember just lying on the couch after and bawling my eyes out. There were still so many unknown questions.

I had to wait 6 weeks for Briella to grow and come farther along in the pregnancy when we had another specialized ultrasound at 24 weeks to look at her anatomy further. We went to the University of Michigan where heart doctors looked at the anatomy of her heart to make sure all four chambers, arteries, veins and valves were there and in place. Thankfully her heart was developed properly except for the fact that it’s on the right side of her chest and not the left. The long 6 week wait for the ultrasound had me collecting a ton of information about Situs Inversus and how scary it can be for some. In Briella’s case she is a total reversal of all organs, but in many other cases there are organs that are missing, organs that are in or not in their proper locations and even crippling defects with the heart. Many cases the heart is not fully formed and is missing chambers or veins and arteries going in and out of it. So when we heard Briella had the best case scenario of Situs Inversus we felt so relieved.

Courtesy of Caroline Naif

The next few weeks were full of ultrasounds and doctor visits checking in on how Briella was doing. When 33 weeks came along I had an ultrasound at the hospital and received more bad news. My placenta was beginning to shut down and Briella wasn’t growing like she should in the womb; a condition known as IUGR (Intrauterine Growth Restriction). It was brought to our attention she might do better on the outside then staying inside of me. I began to panic! I was hospitalized for 2 days and given a steroid shot for Briella’s lungs in case she would be coming out early. Upon leaving the hospital I set up NST (non stress tests) appointments every few days so they could keep close watch on how Briella was doing. I went home from the hospital for two days and returned back for my first NST test on exactly 34 weeks.

When I woke up that morning for my NST appointment something told me to pack a bag just in case I have to stay in the hospital again. My husband and I arrived at the hospital and they hooked me up to monitors and within five minutes of me being there they said: ‘The baby doesn’t look good. You are going back for emergency C-section right now.’ With no time to process anything that was taking place the nurses started to prep me for surgery with iv, catheter, and nausea medicine. I said to my husband tell everyone on Facebook, ‘We’re having a baby!’ Tears began to flood my face, not knowing if Briella was okay and not knowing if I was going to be okay. I had an epidural put in place and I was laying on the table ready to be cut open to deliver. My husband stayed by my head to comfort me while I continued to cry in fear of the realization we are having a baby six weeks early, her room isn’t ready and the uncertainty of if I’m going to make it through this. All I could do was pray and say to myself,  ‘I need to hear her cry. I need to hear her cry!’ I hear the doctor say ‘The cord is wrapped around the neck twice.’ I started balling even more, trying to stay calm and breathe and what seemed like forever to get her out, I finally heard her first cry! I immediately felt so relieved! Briella was having a hard time breathing so they had to rush her to the NICU while they finished sewing me up. I saw her for less than 10 seconds.

Courtesy of Caroline Naif

Once I was out of surgery I was sent to recovery where I had to stay for a little while before I could go to the NICU to see Briella. The nurse told me as soon as I could begin to feel my feet and my legs I could go and see her. I was trying like hell to tell my brain to kick and move my feet and legs as much as I could so I could get down to the NICU. What seemed like another eternity after 30 or so minutes, I got to see Briella in her new home in the NICU in an incubator where she will stay for – I had no idea how long. Her little hand held the tip of my finger for the first time and I couldn’t believe how small she was. She was covered in wires from head to toe and the monitors in the room kept making beeping sounds constantly. We could barely see her face because she was put on a CPAP machine to help her breath. The first 48 hours were extremely hard. My husband and I didn’t get to hold Briella until 2 days after she was born; all 3 pounds 11oz of her. We officially became parents to a premature baby about to embark on this NICU adventure together.

I remember asking a few hours after she was born the hardest question you will ever have to ask in your lifetime. I said to the nurse while bawling and trying to get the words out: ‘Is she going to make it?’ The nurse told me: ‘Never give up hope and faith. Premature babies are little warriors. There will be good days and hard days. Some days are one step forward but two steps back.’ We were so thankful for wonderful NICU nurses who taught us how to change a diaper, feed and burp Briella, how to hold and bathe her and how to participate in kangaroo care. My husband and I became little nurse helpers and quickly learned all the NICU medical terminology and how to read and operate some of the medical equipment. Briella went through many ups and downs in the NICU. She had over 10 iv’s put in place, contracted a Staph infection which she needed antibiotics plus a blood transfusion for and she also had to go under the UV light for jaundice. Finally on the 24th day of our NICU stay and on my husbands 28th birthday Briella got to come home!

Courtesy of Caroline Naif

While our NICU journey was over it will never be forgotten. Briella became a NICU survivor! Briella was born six weeks early so we knew that she would be somewhat delayed in milestones and would probably be a bit behind. When her 9 month and first year well child visit came along the doctors seemed very concerned of how globally delayed Briella was even with the prematurity factor in place. I went over to my best friend Jenny’s house for a play date with Briella and her son Matthew who was born only two weeks after Briella was born. Yes my best friend Jenny and I were pregnant at the same time and no we did not plan it. We just got so lucky to be best friends and pregnant together. Jenny was studying to become a nurse at the time and I explained to her how Briella is so delayed and she mentioned to me, ‘I think Briella might have Cerebral Palsy.’ My heart sank as I said ‘Cerebral Palsy, do you think so? I don’t believe so, she is just delayed because she was a preemie and she will catch up in time.’ Briella started physical therapy around 10 months old to help her to learn to sit up on her own, learn to crawl, stand and walk. Progress in therapy was slow but she kept making gains. It wasn’t until her yearly visit that it was brought up by her pediatrician that we needed to do a MRI scan of the brain to see if there was CP present or any brain damage present and ultimately find out why she was so delayed.

What came next was the start of endless doctors appointments and therapy visits. Briella went through genetic testing first to rule out any genetic factors that may be causing her global delays as well as a ton of blood work to rule out any muscle conditions or diseases etc. When all of those tests came back normal the next step was MRI. I was terrified for Briella to be put under and having to go through two MRI’s one of the brain and one of the spine which would be done a week apart. We delayed doing the MRI until Briella was 21 months and I wish I would have done it sooner. My best friend said to me, ‘What are you waiting for? Go get the MRI done so you can get your answers and know how to ultimately help her.’ I said, ‘You know…. you’re right!’ Briella’s MRI came back conclusive, Cerebral Palsy caused by Periventricular Leukomalacia known as PVL which is a brain injury that affects premature babies. Small areas of white brain matter tissue die either in womb, during birth or shortly after which could be caused by lack of oxygen and prematurity.

Courtesy of Caroline Naif

Receiving Briella’s Cerebral Palsy diagnosis was devastating. We thought we had beat all the odds. She survived through a threatened miscarriage, she beat the NICU, she had the best version of Situs Inversus by being total reversal and now we have to accept that she has CP- a life long condition with no cure. We went from premature baby parents now to special need parents overnight. My husband and I were now entering a world of the unknown. Realizing what our new normal is and that it comes with a million questions and few to little answers and guidance on what to do next. Briella’s diagnosis of CP had my husband and I falling into a sort of a depression trying to accept what life will be like with Briella and the unknown future. It was extremely hard talking to friends and family about it. Everyone would ask is she going to walk, is she going to talk and honestly to this day we still don’t know or have definitive answers. We respond with, ‘One day.’

When Briella was 2 ½ I knew I had to do something. We as parents had to be Briella’s advocates now and for the future. It was then I started to open up more about Cerebral Palsy and began to do a ton of research about it. The hardest part for us was trying to get an understanding of what CP looks like? There is mild, moderate and severe cases. Will she walk, talk, and be independent enough to live a normal life? All of these questions arose when I began my research but we didn’t know what type of CP she had until we set out to get a second opinion of a neurologist through the University of Michigan. Briella’s official diagnosis: Mild to Moderate Spastic Diplegic Cerebral Palsy. The hard part about Cerebral Palsy to predict really is the outcome throughout life from child into adulthood. CP is so different in every child and really ultimately it depends how much research a parent can gain access to and how many different therapies and treatment options you can get your child involved in once you receive that first diagnosis. Not to mention the financial burden of getting insurance to cover therapy appointments, therapy equipment and time one or both parents need to take off of work to be able to take your child to all of these never ending appointments.

Courtesy of Caroline Naif

Finding the right treatment options for Briella has been life changing to her continued journey and milestones throughout life. June of 2018 Briella underwent a life changing spinal surgery called Selective Dorsal Rhizotomy (SDR) which helps to eliminate the spasticity or tightness of muscles in the body caused by Cerebral Palsy. As children age and grow into adulthood spasticity continues to cause pain and wear and tear on the body which could cause Briella to end up in a wheelchair later in life. That is not how I want to picture Briella in the future by being bound to a wheelchair. SDR surgery also helps to give children with CP the ability to independently walk which is one of our ultimate goals for Briella the sense of independence. Only four months after the surgery with tons of hard work in therapy Briella took her very FIRST INDEPENDENT STEPS at 4 years old!

Courtesy of Caroline Naif

We advocate our voices for Prematurity Awareness, Congenital Heart Disease, and Cerebral Palsy. We also advocate for Inclusion, acceptance, disABILITY awareness/rights and the special needs community of amazing warriors all with an inspiring story. It makes you stop and think what some of these kids struggle to do and have to go through daily and how what seems hard in your normal everyday life is really nothing compared to what these kids have to go through. Love what really matters! Life is short. Teach your kids to love and not hate. Talk to your children about the many kids who live with these daily challenges. Tell them to be kind and befriend them even if it’s a simple hello or holding open a door. We hope that you follow along Briella’s continued Cerebral Palsy journey on her Facebook and Instagram pages. What I have learned from this journey is patience, to NEVER GIVE UP and to continue to have hope and faith as we travel through the journey of the unknown. Proving the impossible can be made possible!”

Courtesy of Caroline Naif
Courtesy of Caroline Naif

This story was submitted to Love What Matters by Caroline Naif. Follow her family on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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