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!


Anonymous said...

I'm so sorry for your struggles. I had a low supply also and I firmly believe that formula is not good for babies. I turned to raw goats milk for my daughter. I started her on it at 4 months with no issues at all.

Goats milk is the the closest thing to human milk in nature and is well tolerated my most infants.

You might want to try it for Anthony and see how he does. Make sure to get milk that is hand milked as 90% of bacteria in raw milk come from the milking machine.

Good luck and my prayers are with you.

Shari said...

Hello, I hope this post is not too late for you and your little boy. Please try contacting via facebook this is the Human Milk 4 Human Babies donation site for Oregon. They put mothers in need of milk donations in contact with mothers with milk to donate. Hope this helps you. Your family is in my thoughts and prayers.

Anonymous said...

Your situation has brought tears to my eyes, I have a 7 month old son also :)I'm sure that you have heard this from others, but breast milk can carry many diseases. And although another mother's intentions are good, she may not know that she is carrying a disease. $8 is very expensive. Have you tried contacting a pediatrician outside of your area? You may have better luck finding food that his tummy agrees with through suggestions of a pediatrician located in a more populus area, after all, they have seen more patients :) good luck to you and your family, you're in my thoughts...

Anonymous said...

I am praying for baby Anthony! He is such a lucky boy to have such amazing parents who have fought for his best interest, despite terrible medical care from irresponsible doctors. I am so glad you've found a great doctor, who's giving him the care he deserves. Keep listening to your gut brave Mama! I have an 8 month old son, and can not imagine how difficult it would be to go through something like this. Keep your chin up and know people are praying for you! Give Anthony kisses for me!

Brita A.

Anonymous said...

I hope all is going well with the re-lactation process... Unfortunately the only thing my family and I can do right now is pray for your family. Best of luck and you and your family are in our prayers.

H.P. LIebekraft said...

What stupid so called medical professionals. How dare they treat you so deplorably? Why would they not want for your child to thrive. I know, I work in the medical field myself, I encounter this sort of short sightedness more often than I care to admit. I am sorry for your struggles.

Melody Fraley said...

I truly feel for you, but am glad that he is doing better! I wish that I lived closer so that I could help with your son. I will keep you in my thoughts!

Jeanette Arnot said...

I am currently pumping and am going to deliver my breast milk to a woman in arcata for you! I was reading a comment on here that breast milk can carry diseases. I just wanted to let you know I have done all necessary testing to donate breastmilk. I am going to be donating to helping hands milk bank too. I am so proud of you as parents and of baby Anthony. You are all so strong!

Roxy said...

Your story is both heart breaking and heart warming story of a true example of a mothers unending love for her child. I pray that your son continues to grow to be a strong healthy boy and fills your life with joy for years to come. God Bless you and your family.

Roxy said...

Your story was both heart breaking and heart warming because it is a true example of a mothers unending love for her child. I pray that your son grows to be a strong healthy boy and bring you and your family joy for many years to come. God bless you and your family

Anonymous said...

You should post your story here,

I am positive there would be many mamas willing to help

Anonymous said...

You are amazing for doing what you know is right despite that arrogant doctor. I am a breast feeding mom to a six month year old and I would be glad to try help. Wishing the best for you, your family, and your beautiful son.

Keyona said...

I am so glad I was able to donate to baby Anthony and it was very responsible for you to step up and ask for milk, you are such an amazing mother. I really am so happy I could help at least a little.

Anonymous said...

I am touched by your story. My son was born prematurely at 28 weeks, 2lbs 6oz at OHSU Hospital. He was there for 2 1/2 months, and I want to let you know they took great care of him. He was monitored at all times, and went home around his due date just over 5lbs.
I don't understand why the other hospital would not care for your son how they do at OHSU, and to discharge you....But now that he is being cared for at OHSU, he is in great hands :)
I pray for him and your family...

Anonymous said...

I understand that your baby has severe allergies, but why would you accept another person breastmilk not knowing what could be in it?? I too have 2 children with with severe allergies and both had to be on Hypoallergenic formulas, Neocate saved my daughter's life! She was so ill from MSPI (milk/soy protien intolerance) that she was pooping blood by the time we got her on the right formula. I would be very leary about accepting breastmilk from strangers, especially if your son is so allergic to things.

Anonymous said...

Im so sorry and would love to help. I am nursing and pumping for my 3 month old and have plenty to share. I'm in California you could email me

Anonymous said...

For all the people questioning why she would accept breastmilk from other mommas, don't judge, you are NOT in her shoes and your children are healthy, so who is to say what you ould do if you were ACTUALLY in her can say all day long that you would not accept someone else's breastmilk but you are NOT in her shoes so your decision could change if that was ALL that helped your child! I commend her for taking a stand against irresponsible doctors and taking a stand for her son! I have four children and was blessed enough to be able to EBF all four, including a set of twins, BUT if there was ever a need for any of my children to have nothing but breast milk cause we had tried formula and it was killing my better believe I would ask for help from other mommas!!! Also, saliva and other body fluids can carry diseases too...are you saying she was not responsible enough as a parent to make sure the breastmilk was clean before she gave it to her son....SHAME ON YOU PEOPLE, and God bless those who did help and continue to help mommas with your breastmilk or in any other way!~

Reductio Ad... said...

why "especially if your son was allergic to things"?! I do wish people wouldn't comment on things they don't understand! This mother has done the best she can after being set adrift by irresponsible medical professionals who could have set her up with milk bank donated milk if they had done their jobs properly. Yes, diseases can be in milk, yes women donating may not be aware they are carrying a disease but diseases, even HIV, are destroyed by preheating donated milk, some of the good stuff is also destroyed but it is still a million times better for a sick child with a digestive problem! I would be very wary of giving formula to a sick or allergic child, this baby has much more serious medical problems than just a milk protein allergy! WHO recommend mother's own milk from the breast, if not mother's own expressed milk, if not another mother's expressed milk and only then formula and that is just for a healthy baby!!! I can't help feeling that really people are just against it because they feel breastmilk and breastfeeding is a bit "icky" even if they might do it for the good of their child, which I think is weird.

Rebecca Galbraith said...

You are an amazing Mother, Well done for all your hard work, may God bless your family.