Tip:
Highlight text to annotate it
X
Where can one parent find hope?
What will walking around all day under the scorching heat bring him?
How many more letters will he write and send to chance?
He may be crying for the moon, but he will do anything and everything to fight for the child written in in his letters
Bert and Melany never pictured that their youngest child would have to stay in the hospital for a long time
February of this year, baby Axel was born
but they have never been able to bring him home since then
Axel was ok when he came out. His first cry was even strong. But our doctor noticed that he wasn't feeding well enough. He was lethargic and was sleeping most of the time. If you lifted his hands, you'd notice that they were limp and offered no resistance. Most noticeable was he was having a difficult time breathing.
This was when Bert feared for his child's life
I saw my child suddenly turned blue all over. I thought that we had lost him. I stepped out and I was crying so hard because I thought that he had died. I came back and I saw that they had intubated Axel. He regained his color and he was slowly coming out ok. I was so thankful because my child came back to life. And I was hoping that everything was going to be alright for Axel from then on.
For a mother, it is tremendously difficult. I mean, you've been so careful during your pregnancy for 9 months. And now when your child is born, he's facing this huge medical condition and you don't understand why.
After almost 2 months of a battery of tests, doctors were finally suspecting the condition to be that of a rare disease. They sent out Axel's blood sample to a medical facility in the United States to be tested.
His condition is called Congenital Central Hypoventilation Syndrome. The hallmark of this disorder is the inability to breathe on your own. Axel seemed like a healthy baby when he was born, but his drive to breathe is almost absent. That's why he needs to be hooked to a ventilator to assist his breathing, if not, breathe for him. They literally forget to breathe. They do not sense the need to do so. Even for older CCHS children, they would suddenly pass out because of this. Constantly you need to remind them "hey, you need to breathe."
At first, I was like "Can I do this?" I mean, I'm already a nurse. It's totally and strangely different when all of a sudden my patient is my very own child. Suctioning my own baby...just difficult...truly difficult.
Usually, a newborn's breath rate is between 40-60 breaths per minute. Axel, however, can only do 15-20 breaths in a minute. And when he's asleep, we'd notice that his chest seldomly rises
Aside from CCHS being a rare disorder, it has no known cure. And it is lifetime. Axel's doctor reached out and communicated with the CCHS Family Network. According to information gathered, there are only between 500-600 persons in the world who are afflicted with this disease. Baby Axel is the youngest among 3 surviving CCHS patients here in the Philippines.
I approached the CCHS Family Network for support. Because Axel's parents were really losing hope, which was expected. For Bert and Melany, they were facing an extremely difficult question - "Will my child survive? Do we keep fighting for Axel's life, knowing that we do not have the money to keep him alive?"
Bert quit his job as a driver, so that he can focus on finding the financial help that Axel badly needs. He has already approached and appealed to most, if not all, of the agencies and foundations here to beg for aid...until one day...
I just thought maybe I'll just write letters asking for help. I really didn't know to whom I should give the letters to. To the Church? To rich people? So what I did was to place my letters in the windshields of all the cars that I can find. But I received no reply from my letters. No one contacted me. No one called me up to say "I want to help." I didn't indicate any amount that I was asking for Axel. I simply wrote, "If you want to see and help my child, please visit us at the hospital."
Meanwhile, Melany reported back to her work as a clinic nurse in a nearby factory. But no matter what they do to look for funds, each passing day only brings in newer bills that add up to their huge debt. Axel's hospital bill has already ballooned to more than 1 Million Pesos (around 25,000 US Dollars).
If only they had a mechanical ventilator, then maybe they could already bring Axel home with them. But a ventilator costs around 300,000 Pesos (around 7,000 US Dollars). And it is an amount they definitely do not have. Axel's life will be dependent on a mechanical ventilator.
We cannot bring Axel home because we don't have a ventilator. And once he's unhooked from the vent, he can easily die. This is why we are appealing to all of you for help. Please help us acquire a ventilator for our baby. We cannot do it by ourselves, because it is just too expensive for us. Axel's condition is lifetime and I pray for people who can help us give our child the things he needs for him to survive. Thank you so much.
The doctors and nurses at the hospital were moved by the determination and love of Bert and Melany for baby Axel, in the midst of this herculian challenge that they face. It was them who told us about Axel's story.
Not once did Axel's parents complain or express any frustration or anger. They never falsely tried to win your sympathy. They are very true to themselves. There may be some times when they'd say "We only have this much now. But we will do everything for our child. Everything." And that humility and determination has endeared us more with Axel and his family.
Like I said, each day that we are able to spend time with Axel, is heaven. Other people tell us to give up on Axel because it's financially impossible. I told them "No. My son will live. My son will grow up just like every one else. Why would I give up on my child? He is going to live."
We are here at the hospital where baby Axel is currently confined. I have with me here a copy of a letter that his father, Bert, sticks in the windshields of parked cars. Now before I meet Axel's parents, I will give the father a call on his mobile.
While Axel's parents are currently talking to his doctor, I called up Bert and he answered.
Bert: "Hello." TV Host: "Hello. Good afternoon. Are you the father of baby boy Sari?" Bert: "Yes. I'm his father." TV Host: "We really want to help you. Are you in the hospital right now" Bert: "Yes, my wife and I are at the hospital right now." TV Host: "Oh ok, can you please wait for us? We will just drop by to meet you and give a small amount for baby Axel." Bert: "Yes. Thank you." TV Host: "We're actually almost there at the hospital. And we are just about to enter...the room"
TV Host: "Look behind you, Bert." TV Host: "This is your letter, isn't it?" Bert: (Recognizes the TV Host) "Yes it is ma'am." TV Host: "We're here to help baby Axel. Your doctor was our accomplice."
TV Host: (To Melany) "You're a nurse, right? And now your own child is your patient. This must be very difficult for you." Melany: "Yes ma'am. It is truly difficult. But I will do everything for my child. Thank you so much for your help ma'am!" TV Host: "We're here to extend some help for baby Axel. Please accept this small amount from the show." Melany: "Thank you so much ma'am." TV Host: "We hope that when people get to watch our program and find out about you son's story, we can rally good-hearted people to help your family acquire a ventilator for baby Axel." Melany: "Thank you so much, ma'am. And thank you so much Doc." Doctor: "I admire them. They will not give up their child's fight. Even to the last centavo that they have or do not have. Even to buy milk, the father would humbly tell me that he doesn't have money to buy Axel's milk. And for that he was sorry. So the doctors and nurses here chip in to get Axel through. We truly hope that we can come up with the funds so that the family can bring Axel home. I know Bert and Melany can't wait for that day to come."
Melany: "Thank you doc, really!" TV Host: "She didn't tell you that it was our show that was featuring Axel's story?" Melany: "No. she didn't. From the very start, Dr. Rodriguez has been helping us out with anything and everything. Thank you so much doc."
Doctor: "I'd like to thank you and Bert as well. If Axel was born to different parents, they may have easily given up and simply signed that piece of paper."
Melany: "We love Axel with all our hearts. Whatever happens, we will continue to fight and win for him." TV Host: "Where do you draw your strength? Where do you draw so much hope?" Melany: "My husband helps me so much. He is strong-willed and very determined. Me, I am not as strong as he is. But everyday, he tells me that is there is hope. God will not forsake us." TV Host: "So how do you guys manage? Because I know you, Melany, have returned to work." Bert: "I'm the one who goes out looking for financial aid from foundations who are able to. It's so hard to go in all directions not knowing what direction you should be going to so that I can find someone who can help my son. It drains you so much. But every time I see my son's smile, I become strong again. Though also, when I see him in pain, my heart is pained as well." TV Host: "Seeing how adorable Axel is in the photos, I begin to understand what he means."
That's why I was excited to see baby Axel in person, who at a very young age, has been a source of strength and inspiration to the people that care for him at the hospital.
Axel cries a lot. Though there are more times when he smiles and laughs a lot. He always wants company. He talks to you to your heart through his eyes. The nurses here tell me that he doesn't like being left alone in his NICU room. He always wants somebody by his bedside.
They say that a newborn child is a sign of hope in this world. Despite the sadness that this rare disease has brought to Axel's family, much love has come from the people whose hearts Axel's smile and his parents' love have touched. That's why we are hopeful that even more good people will give and help out this brave family.