Friday, January 13, 2012

Milk for Baby Anthony

Anthony's start in life was a rough one. His short life here with us has been hard, filled with
struggles, despair, but also hope. When Anthony was born, we both had an infection raging inside of us.

He made his way into the world without a sound. The infection took its toll on his little body and he
was too weak to cry or breathe. He was whisked away to the N.I.C.U. I would have done anything for him, but the only thing I could do at the time was pump milk.

He wasn't strong enough to nurse, so I pumped every two hours on each breast. I was lucky to get just a few ounces after an hour. I became so desperate that I would squeeze my breast to get every possible drop to the point that I was bruised. But, I was determined to provide him with what he needed most.

Soon after, Anthony started to get stronger. But as he got healthier, it seemed my milk supply
started to dissipate. Just as he was getting healthy enough to come home, my supply was down to
nothing. I couldn't make enough milk for him anymore! So, we turned to formula.
Right away, we noticed a change in him. He was colicky and restless, with long nights of
screaming that wouldn't subside for anything. It was terrible at times, and I couldn't watch his little face in so much pain. The doctors worked with us, and switched him to many different brands of formula over a long period of time. With each formula change, his reaction got worse and worse. He started to throw up, and he would get so constipated that he would sweat all over his body and bleed. 
Some of the formulas we tried. There were more brands, but we had already thrown away the containers.
There were so many times that we had to head to the hospital because he was turning purple and wasn't breathing. Soon, a bad situation turned dire after months of trying different formulas. Anthony was wasting away in front of our eyes, and our small town doctors weren't listening to my pleas for help! It was months of trying everything; we were at the doctor's every week. Anthony got so lethargic he wouldn't even cry anymore, and before we knew it, his milestones were passing him by. I kept telling the doctors my concerns, but for them it was normal. We were told to just give it time. His feedings got few and far between , and it took hours just to drink three ounces of formula. Finally, he wasn't even on the growth charts for height and weight.

After months of struggles, we made a decision to ask for donated breast milk. It's what worked
for Anthony at the start of his life, and was the best chance we had. The doctors were not listening to
my plea for my son's life, but I would do whatever I could. I would not, and could not, let my child
waste away in front of my eyes. I started researching how to find breast milk. People told me about
milk banks. I was so excited that there was a place to access mother's donated breast milk. However,
my dream quickly shattered in seconds when I realized that milk costs about $5 - $7 an ounce. My
husband and I would never be able to afford to pay for this. Instead, we reached out to our community of mothers and asked for help. We posted on Craigslist, Facebook, and many online sites. 
Finally, our plea for milk was heard!
Within the first week on donated breast milk, Anthony gained four ounces! We were overjoyed
with some positive news. It took him a month to gain three ounces with formula. His color started to
come back to his skin; he started to move and act like a normal baby. He began to make little sounds
and cry out for me again. It was hard for me to think that this little child so full of life was totally
different just a week prior. There was so much improvement - even more than what we were expecting in just a week's time. All of this with just donated breast milk! That's when I knew just what he needed- breast milk. 
Watching my child laying in my arms, moving his little legs and his eyes sparking with
the light of life was amazing. I knew our choice to choose another mother's milk over formula didn't
just give me a chance to grow and become healthy again - it gave him life!
I became a mother on a crusade. I was going to do whatever I could to find the milk he needed,
whether it was my own or from other mothers willing to help. I was going to do all that was in my
power to get him the milk he needed so badly. We started getting an overwhelming response from
mothers on Craigslist and then the local news called us to do an interview, mainly because this was
such taboo and unheard of. We were so desperate and willing to do anything to help our son. The
interview was bittersweet, as we got both positive and negative reactions. A lot of people were shocked that I would risk my son's life by giving him milk from another woman. Then, we were shocked to find a letter in the mail from our son's doctor discharging us from her services. This was due to our choice to give Anthony donated breast milk. 
The doctor stated she discharged him from her clinic because she
did not believe in me “soliciting breast milk”. It was a blow to us because our son's outlook was just
turning around. Our weekly visits were filled with hope with each ounce Anthony put on. Our son
needed medical care; just before my plea for breast milk the doctor had finally agreed to run some
medical test, Anthony would not track anything and even though he was being more active his
milestones they were still extremely behind. However, when she discharged Anthony from her care, all the testing had to stop. The hospital would not accept him without a primary doctor. I called our
insurance and I was mocked, humiliated, and yelled at for being so "irresponsible and stupid for
feeding my son donated breast milk". As a mother, I would do anything I could to save him, and they
were not. They were watching him suffer, but they were not the ones holding his limp body in their
arms as he was slowly dying. I was. We felt we weren't doing anything "irresponsible" or "stupid".

Letter from doctor

I regret to inform you that I am withdrawing from all professional care for Anthony. This decision
was made based on the recent events revolving around soliciting breast milk for Anthony without my
knowledge. It is clear to me that you are in disagreement with my recommendations and not
following my instructions. I do not feel I can provide adequate medical care for Anthony if you do
not trust my professional judgement.
I will be available to see Anthony on an emergency basis until January 15

I called many doctors, but they would not take him because of our choice to give him donated breast
milk. It was a frightening and frustrating situation, and after many rejections, I wondered if I was
making the right choice. Finally, we were able to find an amazing doctor who actually listened to us.
She took a closer look at his medical file and made us aware of the red flags that should have been seen and taken care of many months prior. Our new doctor admitted Anthony to the Children’s Hospital  (OHSU) in Portland, Oregon the next day. In the days that followed, we were able to get some answers.

Unfortunately, we found out that my son is missing his corpus callosum and he is blind, though
we don’t know to what extent. He was diagnosed with Failure to Thrive, Septo-Optic Dysplasia,
Absence of Corpus Callosum and Optic Nerve Dysplasia. We also learned that Anthony's stomach doesn't digest food properly. This is the main reason he is so allergic to formula. Finding out this news was hard and disheartening for our hopes of our son's life. But at the same time, we also found out why breast milk works for him. Breast milk is easier to digest than formula. Formula was giving his little body no nutrition. When we made the choice to switch to donated breast milk, we made the choice to save our son's life.

Anthony has been gradually improving. He suffered for five months on formula; in this time, I
saw him smile maybe once or twice but never laugh. He is now such a happy baby. He smiles and
laughs all the time, and is no longer colicky or constipated. Anthony is getting stronger and I am so
happy to say that in his fourteen months of life, he has never been sick – not even a little cold. I truly
believe that he is so healthy because of all the moms who have donated. I have lost track of all the
donations but I believe more than fifty donors have donated milk from all races. For all those moms
who are wondering if this is good for your baby, I can say this was the best decision that I ever made.
We are filled with so much gratitude and appreciation to all the mothers who have donated to
Anthony. These women helped save my son's life without us even knowing it. And with that, I will be
forever thankful of their sacrifice to help our dying child. No words could not express what we feel in
our hearts about what these mothers gave to us. I owe my son’s life to all the amazing angels who have helped, donated, and prayed for us. I have to say this hasn't been an easy process, but in my personal experience, it has saved my son's life.
Thank you from Miguel, Yecenia, and Anthony!