Our Christmas Story

It's December once again -- Christmas time! December is a very memorable month for me, Matt came into our lives 12 years ago. Five days before Christmas, I gave birth to my first child. On top of the excitement of seeing him for the first time, I was very anxious that I might not be able to cuddle him right away because he's scheduled to be transferred immediately to another hospital. It has already been planned a few weeks before I gave birth, a team of doctors will be waiting for him at PGH for his very first major surgery. My husband had to go through the ordeal without me and I had to recover fast from my CS (at Perpetual Hospital Las Pinas) so I can be with them as soon as possible.

I can not forget when my 7th month ultrasound results revealed that our baby has Hydrocephalus and probable Spina Bifida (SB).  Both terms scared me! My fears were doubled when I learned that Spina Bifina means "open spine". It is a congenital defect wherein the spine failed to close during the first month of pregnancy.  Most patients with this condition also has Hydrocephalus also known as "water in the brain." I can not believe how can this happen to my first baby!  According to statistics, SB occurs more frequently among Hispanics and whites of European extraction, and less commonly among Asians and African-Americans.  It's like winning the grand prize in a raffle among thousands or millions of entries!

Psalm 139:14 I praise you because I am my son is fearfully and wonderfully made;
   your works are wonderful, I know that full well.

I spent the next two months researching more about his condition, praying unceasingly for a safe delivery and preparing ourselves for the worst!  I was praying for a miracle that the sonologist just made a mistake and that everything will be alright.  But the repeat ultrasound in another hospital revealed the same result. That time all we can do was to wait and pray.

I was scheduled for a C-Section operation on December 20 (38th week).  We can not risk labor as it may cause further damage to my baby's spine. At exactly 2:57pm, Matt was delivered successfully. Apgar score was 8,9 which is quite good. But his head was swelling due to intracranial pressure inside the skull. CT scan showed dilation of third and lateral ventricular system. Impression: Obstructive Hydrocephalus. His back has a big lesion. Part of his spine was open and protruding. There's no skin but only a thin membrane covering it. If I went through labor, that thin covering may have been torn. The Clinical abstract said Lumbo-Sacral Meningocele, leaking.  Our fears were confirmed by the neonatologist and neurologist --  Matt has the most severe type of Spina Bifida called Myelomeningocele in the Thoraco-lumbar spine and he might be wheelchair-bound.

Quoting from a website....

The most serious type of spina bifida, that is usually what people think of when they hear the name of this condition, is Myelomeningocele. Although it is rare, it can be a severe condition causing damage to the nervous system. In this case, the spinal column will be open along several vertebrae in a row, rather than just one or two. The spinal cord and its surrounding membranes may push out of the body to create a sac poking out of the baby’s back. 
This can lead to infections in the nervous system, which is a severe side effect of this condition. Surgery may be necessary to close the spinal opening. However, if damage to the nervous system has already occurred, there may be a slew of symptoms that accompany this. Some of these include:
1. Paralysis of the lower limbs
2. Loss of sensation in the skin
3. Urinary or bowel incontinence
4. Hydrocephalus or excessive fluid surrounding the brain

In the case of this final symptom, which is caused by problems with development in the embryonic neural tube, surgery will be necessary. If left untreated, severe brain damage, including retardation, can occur as a result.

Myelomeningocele in the lumbar area.
(1) External sac with cerebrospinal fluid.
(2) Spinal cord wedged between the vertebrae.

I slept throughout my delivery. I didn't even know what was happening around me. I was at the recovery room for the longest time! A few test were done and they brought Matt to NICU. My husband was so busy talking with all the doctors, settling our bills and arranging Matt's transfer.  He was not able to say goodbye to me (which I understood) when they left in an ambulance for PGH around 11pm.  Our families were all there.  Even my brother-in-law (a Cardiologist) witnessed my delivery and accompanied Louie and Matt until they were settled in PGH.  My parents stayed with me while my in-laws provided their support to Louie and Matt.  We're just so blessed to have all of them.

At exactly 7am the following day, barely 16 hours old, our son's tiny body underwent a 10-hour surgery.  It's very important that a Myelomeningocele repair is done within 24 to 48 hours after birth to prevent infection and further injury to the child's spinal cord or nerves.  Unfortunately, the surgery cannot correct the defects in the spinal cord or nerves. His spine has been repaired and closed by doing a skin graft from his right thigh to cover the part of his open spine. 

Matt's back 12 years after repair.

A Ventriculoperitoneal (VP) shunt has been placed on his head to drain the cerebral fluid to his stomach.  It's a soft tube inserted on the ventricle of his brain passing through the back of his left ear down to his stomach. That tube will be inside his body forever. Whew! I can't imagine how his Dad felt while patiently waiting for the doctors to come out and give updates on our son's condition.

Source: http://www.chw.org/display/PPF/DocID/22503/router.asp

I was so determined to get well immediately. Hindi man lang ako nakapag-inarte kahit sobrang sakit ang tahi ko!  I was able to join them 2 days after.  When I saw Matt I didn't  know what to do.  He's the most beautiful baby for me. Of course, all moms say that to their own child! I would like to cuddle him but it's not possible because there were so many tubes attached to his very small body. I talked to him all the time and he would respond to my voice.

Matt can not stay in NICU because he came from another hospital. They have to protect the other babies from infection. We needed to hire private nurses (3 shifts, 24/7) to attend to him.

Christmas Photo. Siopao!

Thankfully, his head was shrinking slowly each day. The shunt has been doing it's job up to this day!

We spent and celebrated Christmas and New Year at the hospital.  From our 7th floor room, we can see the grand fireworks all around us.  It was the turn of the new millennium! Everybody was so excited to welcome year 2000.  How I wish we're also at home celebrating Noche Buena and Media Noche with our extended families. It would have been so exciting because there's a new baby.  But we're more than thankful that we're together. It didn't matter that we're confined in a small hospital room. What's more important was having our son with us. We're full of hope for our new family. We're celebrating Matt's recovery each passing day, he's getting better and the tubes were being removed one by one. My son was a fighter! I was able to breastfed him comfortably.  We felt so much love from our family and close friends and it made us stronger and more optimistic. 

First family picture

After spending 23 days at PGH, Matt was finally discharged! We were so relieved that we can finally go home but with a long list of doctors' orders.  Praise God, He has provided for all our financial obligations. We can't wait to sleep in our own bed!

Cute baby pics

The next six years were the most difficult time for our family.  Our life revolved around Matt and our work.  We had to save for Matt’s medical expenses. We were going to different hospitals from Alabang to Las Pinas to Makati, Pasig, San Juan, QC and Manila for his check-up.  Name it and we have visited almost all the major hospitals! He has undergone CT scan, ECG, EEG, Hearing tests, MRI, Kidney scans and more.... We never got tired of talking to doctors about his condition. We don't know any SB patient in the Philippines that time so I even signed up in e-groups of parents with SB children in the US.  I learned a lot and I became very determined that Louie and I can go through this together.  We easily passed the denial stage, we accepted his condition whole heartedly and that made a big difference.

We believed in early intervention, so upon the advice of his Rehab doctor, we immediately started with Occupational therapy at PGH when he was only 6 months old. Louie brought him every Monday and I went with him every Thursday. This went on for more than 2 years.   Fortunately, a therapy center (Trails Center for Children) opened in San Pedro, Laguna and we were able to get a slot for Matt.  He had been attending OT and Speech Therapy (with PT if needed) until now every Monday. We owe a lot to his very dedicated therapists, Teacher Weng and Teacher Shine. They have been handling Matt for more than 9 years already.

He has also undergone major surgeries on his spine due to Tethered Spinal Cord Syndrome twice (2001 & 2002), at the back of his skull down to the upper neck due to an abnormality of the cerebellum or Arnold Chiari II Malformation (2003), Urinary Bladder Auto-augmentation and MACE (Malone Antegrade Continence Enema) Procedure in 2005.  I remembered that every time he went inside the operating room I will be there until the anesthesia takes effect.  I would leave the room crying most of the time.  I will only be relieved when the doctors or nurses call me to be with him in the recovery room. The last two procedures were done to address his recurrent UTI due to urinary incontinence and bowel problems. We learned how to catheterize him 4 times a day to empty his bladder. We still do this until now but more frequently, 5 - 7 times a day.

In 2004, after 10 fruitful years at work, I told my husband that I am willing to give up my job to be a full time wife and mom.  I was at the top of my career then, recently promoted and due for my annual increase.  My boss was so generous that he even offered me a part time consultancy job so I can manage my time between Matt and my career. I politely declined because I wanted to give 100% of my time to my growing boy. It was a very tough decision but I never had second thoughts about it.  Both my heart and my mind were telling me that my son needs me more than anything else in the world.  He was about to attend pre-school that year and we're also preparing for two major surgeries again.

Matt was already a reader before he turned 3 years old. He's Hyperlexic. Quoting from a website, "Hyperlexia is a syndrome characterized by an intense fascination with letters or numbers and an advanced reading ability. Hyperlexic children read at levels far beyond those of their age mates and often begin reading at very young ages, sometimes at age two. Hyperlexic children have excellent visual and auditory memories, which means they easily remember what they see and hear. They use their memory to help them learn language."  We capitalized on this, we invested in books and he will read endlessly.  His memory is amazing! What he reads, he remembers and he never forgets.  I will constantly ask him of events that took place years ago, he still recalls all of them especially our family vacations.

Dec 2004. We always go to EK during his birthday.

Mar 2005. First cable car ride in Ocean Park, Hongkong

Universal Studios, CA 2005

Baltimore Maryland, 2005

Washington DC, 2005

Disneyland CA

Las Vegas, NV 2005

Bohol 2003

Hongkong 2008

Matt has attended several schools already.  He can easily adjust to any environment. He's always loved by everyone and that really made me happy. School is his 2nd home and I never heard him complain that he doesn't want to go to school even if he's already sick.

Pre-school graduation, March 2006

Musical Production Grade 3 (2009)

Boy Scout, Grade 1 (2006)

But not all schools can understand and implement what special kids really need so I continued to search for the best school for him. (I am just saying that his previous schools are lacking something, maybe special trainings or more experiences in handling kids with special needs.)  But God answered my prayers, I finally found the perfect school for him in 2010. We're very pleased with Optimal Group which is located 5 minutes away from our house. They were able to bring out the best in Matt.

Exposure Trip at ABS-CBN (Aug 2011)

Matt's favorite - outdoor PE

1st quarter recognition day

United Nations Celebration (Oct 2011)

Matt is a certified music lover.  He had a very memorable birthday surprise on his 7th birthday when he visited FilHarmonika during one of their practices. He knows them all by name (but not their face) and what instruments they are playing because he's always reading their profile from souvenir programs. He finally met the orchestra and was able to hold all their instruments. Special thanks to Ms. DJ Francisco-Salonga.

Some of Matt's collection of book about Music. He also has hundreds of Song Hits and other magazines. He prefers books over toys.

In 2006, Matt became a big brother. It was another happy moment for our family. He's such a very sweet and loving Kuya to Belle. Belle on the other hand is also very understanding in spite of Kuya's odd behaviors. I instilled in her that she has to love and protect her Kuya Matt all the time.  They will be best of friends forever! 

 

Matt's 7th birthday, 1st Christmas with Belle

Happy together!

It’s now 2011 and I am still a fulltime mom to my two wonderful kids.  I am very blessed to have a very hardworking and responsible husband. Despite his busy schedule at work,  Louie is a very hands-on dad. Matt and Belle love to play with Daddy during weekends and holidays.

Subic Adventure (Nov 2011)

Late night kulitan... Daddy's back is already aching!

Bonding time in our pool

Matt has improved a lot!  I know we still have a long way to go but slowly, in God's perfect time we will get there.  I can never forget what our neurologist advised us 11 years ago, "Do not look for things that he can not do, but be thankful for every little thing that he has achieved."  We are so proud of you, Anak!

Matt loves swimming and can stay in the pool for hours. Because of his spine defect, his lower extremities (from hips down) have no sensation.  They say if there's a will, there's always a way.  With the help of a swimming coach, Matt was able to learn the techniques of maximizing the strength of his arms to swim without floaters.  Watch Matt doing free style (taken April 2011) in the video below.

He's at his best in the water. He can move around without the help of anybody.

Matt is also interested in baking, our favorite bonding time.

Ecclesiastes 3:11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.

James 1:17 Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.

This is the first time I wrote my personal thoughts about our journey with Matt.  The memories all came back and I can't help but shed (buckets of) tears while I was writing this post.  I just want to give back all the glory and honor to our Lord.  I am strong because He carried me during the most difficult times in the past 12 years. I feel that we have already overcame our greatest trial and nothing can put us down anymore. The cost of raising and caring for a child with special needs is quite high. But we know that our Father in heaven is rich and He will provide for our son's needs. God keeps on sending angels in the form of the doctors, teachers, therapists and classmates who were all very understanding and loving to Matt.  I will always be grateful to these individuals who shared  part of themselves to my son. To our family and friends, you know how much we appreciate your never ending prayers and support. God bless you all abundantly!

Latest Family Picture taken last October 3, 2011 (13th Wedding Anniversary)

1 Corinthians 13:13 And now these three remain: faith, hope and love. But the greatest of these is love.

This is our own story of faith, hope and love. 

Matt, Happy happy 12th birthday.  You have given tremendous joy and inspiration to Mommy and Daddy all these years.  I know that you have also touched the lives of many people for you are such a very sweet and thoughtful boy. Stay cheerful and smart =) We love you very much!

The prince of my life :)

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I would like to append here special comments of my FB friends (before they're gone) so Matt can still read them in the future. It's always a joy to inspire others and likewise a blessing to receive kind words from them.  Nakakataba ng puso. Maraming salamat sa inyong lahat.

Roda Anunciado-Bird - You're an amazing woman and mother! More blessings to you & your family. 

Edwin Cortes It must have been difficult to tell your family's story to everyone but I appreciate your courage to let people see and learn how love and faith transforms. You are truly blessed. Thank you for sharing. :)

Vilma Montealto Manalo I am blessed with your blog, Sha. Merry Christmas to you all in advance.

Anna Mojica-Tolentino I am speechless...your family is truly blessed...and I salute you & Lui...Happy Birthday Matt!

Cathy Cerojano-Bernardo so touching ... I admire your courage. teary-eyed ako nung natapos ko sya basahin. Thank you for sharing.

Neneth Pisano Untivero I only heard a bit of yr story about Matt. Now that I have known about it thru yr blog, i can say that you are truly a strong and a very loving mom. Nakaka bless ang story nyo. Thank you for sharing it to us. Advance happy birthday to Matt and Merry Christmas to all of you. God bless you more.

Lorna Cabuay De Gracia ‎'read every word Shaws of your "Our Christmas Story" and i can't help feel your emotions too, thanx for sharing... you're such a great mom to Matthew, you and Louie raise him to be a wonderful kid... so proud of both of you ♥
i always love to read all about your family> your activities and your home...
Happy Happy 12th years to Matt on the 20th
Merry Merry Christmas... hugz and kisses to you, Louie, Matt and Belle ♥
'enjoy more of your years coming ahead :) 

Jones Ranges Cumpio Blockmate/Friend, I never knew of your story about Matt. I just knew of your girl. I never felt any pity for him when I visited your blogsite. He was/is still wondrously blessed in all aspect - your family have Jesus! I was shedding tears tho' while I was reading your story. God bless him / and your family more! Send my advance bday greetings! Keep on encouraging him on his passion for music! Anyway, if in case you want to inquire of UP Diliman College of Music in the future for Matt :-) just inform me. My wife used to teach there before we opened our school ministry. Who knows, God must have been preparing something super for Matt! :-)

Martie Valmores Tears while reading your post. It's very touching and a perfect example how mothers love their children and how dads work hard just to sustain the needs of his family. Despite of what you have been through you were blessed to raise Matt as perfect as what God wants him to be. Matt is very blessed to have such loving and caring parents and most of all a sister who will protect and love him through the end of time. Happy 12th birthday Matthew :)

MiLot Quiñones It was really a remarkable story of love, hope, patience and faith. An inspiration indeed. I truly Praise our Lord for providing wonderful parents to a very Precious boy, Matt. Blessings be upon you & the whole family more and more. I miss you Matt, happy birthday!

Kristela Sobejana-Diesmos Well written mommy! You are very lucky indeed to have matt in your life and i'm also very thankful that once i was a part of your journey. He's an angel from heaven!

Antoinette Fugen Burkhart Sis, thank you for sharing. Your family is blessed to have each other. You inspire me to be a better mother to my kids and a wife to my husband. God bless you and your family always.

Lani Matta Macaraeg Hi Sharon, I'm so touched with your blog. The kids are very lucky to have you & Louie. You are both an inspiration to all parents. God Bless you both, Matt & Belle, and your families as well. (hugs) =)

Joyce Trinidad-Ferrer I remember crying when we first learned about your delivery and Matt's condition 12 years ago. Now, i can't help but cry again not in sadness and shock but in awe and admiration at how far you and Louie have brought Matt in this journey. Your family's story of love, courage, patience and strength is an inspiration to all. We're blessed to be part of your circle.

Karen Aye Ate happy birthday to matt! Much lovr fr all of us here:) we miss u there... i praise God for your courage and faith, let's keep each other in prayer always. We love u all:)

Nimfa Belaro Jones Very inspiring! God is really good..He's the best!! God bless you, Louie, Matt and Belle...You may not know what the future will bring but I am very sure God will be there:)

Esmeralda Herrera Mam Shaws! OMG! Speechless po ako. Full of emotion and humanity... Your family is truly an inspiration. God Bless po to you and your family! Merry Christmas po!

Weng Arao Ynion your family is such an inspiration...happy birthday Matthew, we are blessed to be a part of your journey,I know we'll have more exciting years to come!:)

Bing Emman this is a very touching story. maga na ata ang mata ko!!! No doubt that the Lord God will continue blessing you and your family, because you and sir louie are one of our biggest blessings here on earth. :) we love you!