Alice has Neonatal Marfan Syndrome

It all started when my water broke on July 29th 2018. I was awaken in the morning to my water breaking. My husband and I rush to the hospital to see if my water did actually break and found out that sure enough it did. They told me I had to stay pretty much on bed rest at the hospital until I deliver. For three days, I lay hooked up to machines to see Alice's heart rate, they also gave me shots to help develop her lungs faster. After two days of doing this I then was sent to a postpartum room where I was able to do more things like take a shower and move around. That was so much nicer than the being stuck to the bed. I enjoyed that for one day. The next day began quite nice and peaceful; everything was going great and Alice didn't have any issues, that was until it came time for the morning checking of her movement. We noticed Alice wasn't moving as much so I had the nurse check her heart rate to see what's going on. We left it on for a good two hours and then the nurse came in to tell me that we were going to do an ultrasound to see what's going on. I thought, OK no big deal but she didn't still didn't want to move very much.Then a doctor came in to try and get her to move and nothing, so, for after solid hour on the ultrasound it wasn't looking good. More nurses came piling into the room and wanted to gave me magnesium for brain development of Alice and then the doctor said do you have anyone with you today? Where is your husband? I told her at work. She said tell him to hurry here, it's looking like we are going to do an emergency c-section. At this point, I'm freaking out and did not want her to come out so early let alone have a c-section.  My husband had an hour drive to the hospital and no one was within an hour away from me so we rushed into the surgery room and I had a c-section. This was one of the scariest things  I have ever had to go through especially having no one there with I knew. The c-section only took about 20 min and then my sweet Alice was born! After they were finished stitching me up I had to wait three hours for the numbing to go away so I could see my sweet girl. When I did see her all I could think was she was just the most beautiful baby I have ever seen.  The day after having her, I had to learn about having a baby in NICU. Alice was born at 27 weeks, so she was expected to  three months in NICU, which was a very hard thing to try and understand. She has been in an incubator for her whole visit so far. I was told for the first three days I wouldn't be able to hold her due to the antibiotics being given to her to make sure there wasn't an infection. This was one of the hardest things to do. A month goes by so slowly and Alice has many ups and downs. One day, her doctor takes us into her office and tells me and my husband that Alice may have Marfan Sydrome. She went on to explain what it was. This was the scariest news and I didn't think it could get any worse then all of the sudden Alice begins puking yellow and had some bloody stools. The doctors thought it may be an infection or a dairy allergy, so they told me to stay away from dairy because I was breast feeding (although I had to pump because she was unable to nurse yet) and they put her on a 7 day antibiotic. Once that was completed, they introduced formula while waiting for my milk to become completely dairy free which takes anywhere from 10 days to 2 weeks. While waiting, Alice developed the same issue with the yellow vomit again, this time they began a ten day series of antibiotics. They did a procedure with a scope to see the inside her abdomen and see if they could tell what has been making this happen. Thankfully, everything went great with that. After the ten day round of antibiotics was complete Alice began receiving my dairy free breast milk yesterday, so far so good! Thats wonderful news but Alice's breathing is not getting better so they have introduced a steroid that should help her lungs. It is another 10 day round this time of steroids. Hoping all goes well with this.  After all of this happened, we received news back from Dr. Dietz, a specialist on marfans from John Hopkins Hospital, that confirmed her neonatal marfan syndrome. Alice is the first premature baby that they have found who has this syndrome. Because she is the first premature baby to have this, all they have to compare treatment for would be full term babies with the syndrome and because they are full term their bodies are more developed and treatment will be much different but they are not sure what that treatment will be. After being told this extreme news, the next day, we were told that her life expectancy was 4 years and that's with a full term baby, so they were not sure for Alice. I lost my mind that day. I was in shock and never thought I would cry so much in my life. After a day of absolute mess I sent a request on facebook to a marfans support group and it was the best decision I have ever made, not only did I get information I was able to talk to other mothers who are going through similar situations with their full term babies with marfan syndrome. I still haven't been able to find anyone with a premature baby with marfans but am so glad I'm able to relate to someone. This is just the hardest thing we have ever had to do in our lives, the unknown of her life span and of what to do next is exhausting and heartbreaking as well look at our precious baby and know their is nothing we can do..  This is our story thus far, I will be sure to update our journey as it continues. Thank you so much<3    The reason we are creating this GoFundMe account is for Alice's medical needs. We have Medicaid insurance but we know all of Alice's special needs will likely not be paid. We also know that when she does leave the hospital there will be many special medical supplies that she will need. I am unable to work as Alice needs so much care. All of the financial responsibility is falling on my husband since we are lacking a second income. This GoFundMe page is intended to help Alice be healthy and for our family to thrive. We appreciate anything and everything that people may contribute to our needs. May God bless each of you ❤ Sincerely,  Summer, Diego, and precious Alice

  • Fran Munster 
    • $100 
    • 32 mos
  • Pat Matyus 
    • $100 
    • 32 mos
  • Michael Kielbas 
    • $20 
    • 32 mos
  • Sean & Andrea Thompson  
    • $100 
    • 32 mos
  • Stacy and Steve Ruch 
    • $100 
    • 32 mos
See all

Organizer

Summer Anaya 
Organizer
Onsted, MI
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