Lyanna’s Crusade against CDH and Cleft Lip/Palate Complications

LYANNA JOIE V. PALARCA was born on September 9, 2019 with Congenital Diaphragmatic Hernia (CDH) and Unilateral Cleft Lip and Palate (UCLP). She is currently in the Neonatal Intensive Care Unit (NICU) of Davao Doctors Hospital, Davao City, Philippines, being treated for the cardio-pulmonary complications of CDH. She needs to learn how to breathe using only 1 lung. This respiratory therapy costs an average of 40,000 Philippine Pesos daily. Praise God for His daily Grace and Mercy; giving our little brave warrior the will to fight! We ask that you help her 🙏❤️

WHAT IS CDH?

A lot of people assume that she's premature that's why she's in the NICU. But her condition is far more serious. In fact, one doctor only gave her 40% chance of survival while another said there has been no CDH survivors in Davao. So far, Lyanna is proving them wrong as she lives to this day. Every day is indeed a miracle! 🙌 But we are definitely not out of the woods. This is a complicated and fatal illness. Prayers and continuous treatment are needed 🙏

CDH occurs when the diaphragm muscle — the muscle that separates the chest from the abdomen — fails to close during prenatal development, and the contents from the abdomen migrate into the chest through this hole. It's different for every baby depending on its date of detection. We found out about her CDH at 21st week prenatal anomaly scan. Her stomach, spleen, some intestines, and a lobe of liver were up. We also knew about the cleft about the same time.

THE COMPLICATIONS

She had her surgery at 2 days old to fix the hole. But that was only the beginning of a long treacherous journey. There are cardio-pulmonary complications due to her hypoplastic or underdeveloped left lung. Hence, she is currently intubated to a ventilating machine for her respiratory therapy wherein she needs to learn to breathe on only one lung. 🙏

So far the treatment is okay; she is progressively weaning from the mechanical ventilator but there are setbacks like severe hospital acquired pneumonia and lack of diagnostic facilities and respironics for newborn. She also had holes in her heart (PDA, POF, and VSD) causing cardiac congestion and PPHN (persistent pulmonary hypertension). 😢 But good thing that we have finally fairly managed the PPHN, and the PDA and POF have closed. Only the VSD remains. The doctor wanted to do an MRI for a complete diagnosis but there is no available unit for intubated neonates. Our hospital NICU is only at Level 2 and doesn't use the cuffed ETT (endotracheal tube) which hinders movement. Hence, I have not been able to carry my baby since birth unlike in other NICUs in the United States wherein kangaroo care or skin-to-skin newborn care technique is encouraged. 😢

Our goal is for her to be extubated soon because the longer she's on the ventilator, the more damage it will create on her lungs such as BPD (Broncho Pulmonary Dysplasia). 😢 On a brighter note, the left lung is showing modest signs of aeration. However, we still failed our first extubation attempt at her 8th week of treatment. She was put on a CPAP mask due to her cleft but she was so uncomfortable. After 6 hours of being off-vent, she ran the risk of respiratory failure due to her chest retractions. The doctor had to reintubate her and we're now back on respiratory therapy. The question is for how long? CDH treatments vary for every patient. There is no one formula-result fits all. Some have very short stays in the NICU while others took a year.

THE COST

The cost however is high and adding to our stress. Our increasing medical bill is already at 2 million Philippine pesos (almost $ 40,000). That's exclusive of the doctors' professional fees and we have 5 on board for now: a neonatologist, pedia surgeon, pedia cardiologist, infectious diseases specialist, ENT. And the hospital we're in requires us to regularly update our account or else treatment and medication will be withheld. 😢

The road to complete healing is still long. 😔 We don't know when Lyanna can finally breathe on her own. And when she does, we're looking at a lifetime of chronic respiratory problems and a series of surgeries for her cleft. 😢

OUR CRUSADE

And so each day that she's still fighting is a blessing! Therefore we, as parents, fight alongside her. She's making progress because people are praying for her and people are supporting her medical treatment and auxiliary expenses with generous financial support. ❤️

We've waited 11 years for this blessing. We've already lost our first child Meryl Estel in 2015 at 24 weeks in the womb due to fetal neck teratoma. Lyanna is named such because it means "God has answered". Lyanna Stark, the She-Wolf and Lyanna Mormont, the giant slayer, are also our favorite characters in Game of Thrones. We found out we were pregnant during the Battle of Winterfell episode.

We believe in a God of miracles. We don't know why it has to be this painful and challenging but we believe God has a beautiful plan. We are keeping the faith despite the financial, emotional, amd mental stress. 😢 In fact, I am already seeing a psychotherapist for my post-partum depression (PPD) and post traumatic stress disorder (PTSD).

With CDH, the slightest and tiniest progress are milestones to celebrate. We are rejoicing at how God has sustained our family. Some people are messaging us that they have started praying even when they're not even prayerful to begin with. Strangers are moved by the Holy Spirit to give. Broken relationships have been restored among friends and family. Provision is present. My husband, Joseph, and I are humbled! Truly to GOD be the GLORY! ☝️

So this is the beautiful little girl you have been praying for. This is the brave little warrior you have been helping by sending money and breast milk. Indeed, she is not just our daughter. She is alive because of all of you. Lyanna is your child as well. ❤️❤️❤️

If you'd like to be part of our faith crusade, be our prayer or financial partner. Help our little brave warrior, Lyanna Joie. ❤️🙏👶

You can send financial help directly (preferably) through the following banks in the Philippines:

• Virgilind Palarca, Bank of Philippine Islands (BPI), Savings Acct 2519-224-758
• Virgilind Palarca or Joseph John Palarca, Banco De Oro (BDO), Savings Acct 000-860-680-665

P. S.

Lyanna also needs a regular supply of human breast milk. Unfortunately, due to stress and lack of latching, I have dried out. If you are within Davao City and can give BM donations, please message me, Mommy Jill through the following contact details:

• Mobile Number: +639228384981 or +639228025505
• Email: [email protected]

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