Monday, April 6, 2009

Nathan's Battle

On July 4, 2007, our attention focused to two little pink lines that signaled that our third child was growing inside of me. We were surprised, to say the least...the first of many reminders that God had a plan for our lives that we were not in control of.

In October, we went to a regularly scheduled OB appt to find out that after having two precious girls, we were having a son. I cried. I wanted a son so badly, and I knew that Jay wanted the same. God had blessed us with a son, and we were delighted. During this appt, we were also told that we shouldn't get worried yet, but the ultrasonographer had found 2 cysts on the baby's brain: bilateral choroid plexus cysts. Isolated, they usually mean absolutely nothing, but our OB had to tell us that in some cases they had been traced to be a marker for Down syndrome. We weren't was an isolated finding. However, a level II ultrasound was ordered for further review.

A few weeks later, we had the level II ultrasound with doctors we didn't know. We weren't worried, and we suspected that they would tell us that everything was hunky-dory and send us on our way. They didn't. The resident found fluid on the baby's kidneys: bilateral hydronephrosis in conjunction with the choroid plexus cysts. This was another marker for Down syndrome. We were asked to perform an amniocentesis to test the genetic material in the baby's amniotic fluid but declined due to the small risk of miscarriage. We left the office bewildered and heartbroken...and not knowing if our baby boy would have Down syndrome or not. It was a very difficult 4-1/2 months until our child was born.

On February 24, 2008, I woke up with contractions 2 weeks before my due date. It was a Sunday morning, and we decided to make the trek to church, where I spent the majority of the service timing contractions and remembering to breathe through the pain. On the way home, I asked Jay to run me to the hospital. After a few hours, we realized that I was indeed progressing in labor and we would meet our baby boy soon!

Nathan Andrew Ferrell was born at 11:13 on February 24, 2008 weighing 6 lbs 5 oz and being 18-1/2 inches long. He was gorgeous! I would be stretching the truth a little if I told you that I was at ease with him in my arms right after his birth...yes, I was so incredibly thankful and happy to have him, but I spent a good part of the first few minutes looking him over to try to figure out if he was "okay", so to speak. When all was deemed to be normal, we finally breathed a sigh of relief.

We took Nate home and all was very easy and enjoyable for 2 weeks. Jay's parents came for a visit when Nathan was 2 weeks old, and this was about the same time that I had noticed that the little man seemed to be breathing very strangely. After some help from Jay's mom, I decided to take him to the doctor for a quick peek to ease my mind that I was just being a little overly-concerned and out of practice with having a newborn...although, instead of getting this pep-talk, Nathan was almost immediately admitted into our Children's Hospital for signs of respiratory distress and a presumed meningitis diagnosis. After 4 days in the hospital, we were assured that Nathan did not have meningitis, though he did have tachypnea, tachycardia, retractions, prolonged jaundice, and elevated liver function labs. We were sent home with the explanation of "we have no idea what is wrong with your son".

Within the next few weeks, Nathan's pulmonologist diagnosed him with hypotonia and referred him to a neurologist and a physical therapist. Throughout the next few months, Nathan's differential diagnoses included the awful diseases of spinal muscular atrophy, myotonic dystrophy, hepatoblastoma, ataxia telangectasia, carnitine palmotyl transferase, and mitochondrial disease. With the onset of new symptoms, we saw many new specialists and were extremely thankful that our Children's Hospital was just a few short miles from our house.

Due to a number of abnormal lab results (lactic acid, pyruvate, organic and amino acids, etc), it was presumed that Nathan either had a mitochondrial disease or a fatty acid oxidation disorder. Our neurologist referred us to one of the leading mitochondrial doctors in the nation, Dr. John Shoffner in Atlanta, to have a consultation and muscle biopsy performed. After many months of frustration and tears, we felt like God had opened this door up for us.

On November 4th, 2009, our hearts and prayers were both with the presidential election our country was experiencing and with our son who was undergoing surgery and tests that would prove to change our lives. Nathan's muscle biopsy was a lot easier on him than we was the 3 months of waiting for the results that proved to eat away at our patience and emotions.

On February 2, 2009, we received the results from Nathan's biopsy in the mail. After nearly a year of searching for the root of Nathan's medical issues, and 3 weeks before his first birthday, we received a diagnosis. Nathan did indeed have Mitochondrial Disease, Complex I and III.

We did not expect the wild array of emotions that came with this diagnosis. The relief and excitement of finally figuring out what was wrong with our son was overshadowed by the intense fear of what this diagnosis entailed. This is a chronic, progressive disease, and there is absolutely no way of knowing what may lie ahead of the next corner for Nathan. That fact is crippling at times. But with that, God has given us the grace and strength to enjoy each and every wonderful day he has given us with our precious son...and for each day, we will be thankful.

Nathan is being followed by more specialists than letters in his name...they are all keeping a close eye on how this disease affects each organ in his body. He takes numerous medications all throughout the day to not only help out with his organ dysfunction, but also to hopefully help his mitochondria absorb more nutrients to produce more energy. He has good days where he looks like a normal child exploring the world, and he has "off" days where he sleeps a majority of the day and is generally unwell and exhausted when he is awake. We have learned to change our lives to let him rest when he needs to rest, as this is crucial to his fight against this beast of a disease.

At the day's end, we are thankful. Thankful that God has blessed Nathan into our lives, as we are elated to be given the opportunity to be his parents. Thankful that he seems to have a milder form of this crippling disease than some, for we know it can and possibly will become much worst. Thankful for the opportunity to teach and love three wonderful children about all that God has blessed us with each day...for this love for our children is more than I can ever write about. Thankful for this life...for these children...for this trial...for this love.

Updated video (2010) of Nathan's battle:


StephthefutrRxDr on April 6, 2009 at 7:35 AM said...

He is one beautiful child.

Tara on April 6, 2009 at 10:00 AM said...

So I didn't plan on crying first thing this morning, but I did. What a beautiful post and video Amber. You and your family are a true testimony and have fought this fight with such grace and poise. Ya'll set a wonderful example. Love you girl, and we are always praying for Nathan and the family. It is great to see from the earlier pictures of him how far he has come!

~sydney~ on April 6, 2009 at 1:09 PM said...

What a beautiful post and video, Amber. He is such a stong and wonderful little boy. I know you, Jay, Ab, and Em are so thankful to have him in your life. We love you and pray daily for little Nate and others fighting this disease.

Jenny said...

I loved this post and subsequent montage! Thanks for including Michael and Meredith on your list, as we can use all the prayers we can get! Hope we can talk again soon!

Lynn on April 6, 2009 at 11:39 PM said...

Love the video! He is one special little boy and such a joy to watch. All of your kiddos are adorable! I enjoy reading your blog. You are a great writer w/ a fabulous sense of humor!! God bless!

Adrian on September 1, 2009 at 9:52 PM said...

Hi Amber. My daughter also has mito. Your son looks so great!! He gives me hope that things will get better. Be strong and LIVE every day.Please contact me if you want to talk...I'd love to have a fun, hopeful mito mom in my life.
God bless!

Annette on October 26, 2009 at 4:45 PM said...

Hello from one mito mum to another (on the other side of the pond). x

Holly on April 14, 2010 at 4:02 PM said...

Hello:) My son also has a mitrochondrial disorder, Complex I, III. It's nice to know there are other moms and families going through similar struggles. Thanks for sharing your story. I've been searching for someone to connect with who can understand the struggles....

Julie Arena Swope said...

Hello. Happy New Year to your family! I do not know you but happened upon your blog. My heart goes out to you. I immediately got on my knees and began praying for Nathan. He is adorable! My family will continue to pray for Nathan and your family.

God Bless You All!

~Jana~ on January 12, 2011 at 12:54 PM said...

Hi Amber, My son is also suspected of mito. We are still in the midst of some testing. Nates story sounds similiar to ours. Thank you for sharing. You give me hope that my lil boy could also have a milder form of this awful disease. I would love to talk to you sometime when you are sitting around with nothing to do LOL!!! I have two other children as well so I understand never having any time. So happy that you recently received a good report from your doctors as well. God Bless

Mighty Mito Mom on March 8, 2011 at 3:36 PM said...

Our baby was just diagnosed on 2/11 with mito, Complex I and Complex III deficiencies. We went to the same doctor you did and they added "it does not appear to be progressive" and said the things they told me were totally different than what they were telling patients even one year ago. The knowledge increases/changes that much in just a year with mito, which is good but also so confusing. Thank you for sharing and please keep blogging. You are such an encouragement!

Barbara Santana on April 17, 2011 at 12:24 AM said...

God, help Nathan to confront their obstacles. Beautiful boy!

AccidentallyMommy on July 4, 2011 at 12:33 AM said...

My son has not been symptomatic for any mitochondrial myopathies, but he has a pending diagnosis of Neurofibromatosis I, and we are waiting on the test results for non-standard Cystic Fibrosis. We, too, have gone through quite the list of differentials, and our share of specialists. I found your blog when I was googling around trying to get info on what the camera crew from Discovery was shooting for when we were at Bouleware Springs/Paynes Prairie, and instead found your post about introducing your in-laws to our scutted neighbors. I find myself wondering how many times we may have smiled at eachother in passing at Shands as many of us "specialties clinic families" often do. Just wanted to say hi, and let you know you have one more local following you.

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