UPDATE OCTOBER 2025

so here we are October 24th and we’ve gone from being born at Brigham and womans hospital in Boston being in the NICU for 4 days getting cleared by cardiology that she is able to be transported to DHMC NICU because her heart sounded great for her condition and she wasn’t having any spells or signs of surgery.

we spent the rest of the 3 weeks we were in a NICU at DHMC we have a couple desaturations but nothing too worrisome. She was put on oxygen for a while and had an NG tube for about 2 weeks. We had some testing we got told she was diagnosed with 17q12 chromosome disease we did a couple echo ultra sounds but everything was looking optimistic that Claire was one of the lucky babies in the aspect of being able to wait until she was older and bigger to have surgery. WELL let me tell you. After 3 weeks in the hospital we spent 2 weeks at home. 2 weeks of nursing 2 weeks of bonding with mommy daddy both brothers and sissy. We got to meet so many family members. Aunts uncles cousins nanas papas meme’s and everything in between. I was so happy to have the missing puzzle piece be complete. It didn’t go without saying she right off that bat had appointments after appointments and I can’t tell you how hard it is to have a NB with two toddlers not wanting to be in a stroller more than two toddlers spending 2+ hours in the stroller while Claire sees doctor after doctor.

we found out her kidneys are more complicated that initially anticipated and she will need surgery on them as well but they don’t do that until 12 months so as of now she is indefinitely on antibiotics to prevent any kind of infection that can seriously cause harm.

FF to Wednesday 10/22

we dropped sissy off to school we got the boys myself and baby ready to go to her appt that lasted what I thought was FOREVER. I was super excited because I got to pick up my niece that I haven’t seen in so long and she got to meet ciaran and Claire for the first time and I can’t express how much happiness and joy that brought me. Let me also tell you the doctors said that she looked perfectly fine and I was going a great job. Well when we got ready to head out and bring my niece home Claire was fussy crying I pulled over once and gave her a binkie I made it about 2-3 miles Claire was still crying but I had this immense gut feeling I had to pull over and check on Claire when I opened the door my heart dropped my baby girl was grey, lethargic, sweat dripping from her head and when i say this i mean it she looked dead there was nothing behind her eyes but I had my two sons and my 15 y.o niece in the car. So I calmly got my phone took a picture so I could show the drs got her back to a semi okay looking state brought her home and messaged my visiting nurse. I sent pictures and explained what was going on she advised me to call the on call nurses.

I was advised to bring her to the ER when we got there they called us in I explained what was going on showed them the picture and within seconds she was rushed back to the doctors and she was put on the monitor given an IV got fluids and was admitted to the PICU where they did a head scan I watched nurses and doctors rush in while she’s pale and her oxygen level is dropped and her heart rate is all over the place. I watched my daughter go from a happy little baby girl to a baby that was tired had to will to eat and didn’t have a voice to tell us what she needed or what was wrong. We stayed at DHMC for 2 nights and last night 10/23 she had a great night which is what the drs said no spells.

that morning being told that I was so happy and said well if she stays like this does this mean we could maybe go home and put a hold on surgery. The doctors said that was in conversation and would be figured out in the day well little Claire had a different idea because while I was holding her her oxygen level dropped to 82 she turned pale and in ran the doctors they tried knees to chest and when that didn’t work they gave her oxygen and I was told I’m sorry mom she’s getting transported to Boston she’s going to need surgery soon.

as of right now it’s 10:31pm 10/24 when I’m updating this and she has had over 15-20 spells her heart rate has jumped to almost 200 her oxygen level had dropped and needed oxygen. The doctors gave her a dose of morphine to try to co from the TET spells during the night but she had a pre operation brain scan but what I am being told is she is telling us she needs surgery now and next week looks like when she will have surgery but I will know more in the morning.

sorry for the tremendously long update and if you read it all I appreciate you and please please please keep praying, sharing, and helping my daughter as we fight this battle that is the hardest thing I’ve gone through.

until the next update ❤️

UPDATE: September 2025

i wanted to update this gofund me and give a background on what’s been going on with our little Claire.

I had Claire at 38 weeks at bostons she was born at 3:32pm she was 5lbs 14 1/2 ounces 18 1/2 inches long she was the most beautiful little girl in the world.

after being born she was brought to the NICU where they attached her to oxygen a feeding tube IV and all the wires you don’t want to see on your new born baby.

Boston confirmed her TOF out of the womb and also confirmed her kidney issues.

we did some genetic testing with her umbilical cord to try to pin point the answers to why she had this heart and kidney defect.

about a week after she was born she was diagnosed with a duplicated 17q12 chromosome which explains the heart and kidney issues, but it also opens so many unknown doors for when she’s older as it can effect her speech (early intervention) can cause seizures can effect her vision and possible autism spectrums but this is all something we have to wait for.

she is still growing and trying to eat more so she can finally come home and get ready for surgery which is between 3-6 months of life. Her kidney surgery will be either before or during but this is still unknown.

when she comes home we will need to have her checked with her oxygen machine because when her oxygen starts to drop and she starts turning blue during crying fits that is signs she need to go get surgery.

we are so grateful for everybody that has donated, prayed, liked, shared and everything in between we are going to be having a lot of Boston appointments and Boston stays before surgery and after surgery. We are also trying to keep our household, bills, and our other kids all set while I’m here with our daughter and my husband takes care of the other kids and tries to support the family.

I will be out of work for a year if not longer due to all of Claire’s medical issues and her ongoing treatment she will need as she grows and tries to heal from it all.

we thank you to everybody that is helping our family during the very huge difficult time and we can’t thank you all enough for continuing to support and I thank you for reading her story. I will continue to update and will be starting a video blog of the every day life of Claire as we try to figure out her heart disease and her genetic disease.

again we thank you for being so grateful and kind <3

Hello all, if you are able to read this whole story then thank you! This GoFundme page has to do with my unborn daughter and our family and what her and our futures are going to look like once she finally arrives.

In December of 2024 I found out that I was pregnant with my 3rd baby but 4th child. As most of you know I have a 9 year old step daughter Ainsley a 3 year old son Braxton and a 1.5 year old Ciaran. My experience with having kids hasn’t come with some hardship and scares. Most of you know my son’s Ciarans story and his struggle with his birth and his RSV scare. Thankfully he has grown into a sweet happy loving little boy. My whole life I’ve always wanted a little girl not for some reasons of just having a daughter that every mother wants but having a daughter that I can raise and experience every life even that I didn’t get to do with my mom as she passed away when I was 12. I was very impatient with knowing the sex of this baby since this is going to be our last baby because I mean 1 is a lot let alone FOUR! But I did the blood test at 12 weeks and 3 weeks later very impatiently I may add I finally got the test results. I was at work and I screamed and was so overfilled with joy finding out the gender of my baby is a GIRL!! You can ask a couple of the people I work with at salt hill everybody heard my excitement!!

Let’s fast forward to my 20 week ultrasound when you get the joy of confirming the sex of the baby and they show you what your sweet little baby looks like on the inside. During the ultrasound I was thinking that the tech was taking a lot of pictures of my daughters heart I guess in my mind it was normal but I was soon to find out it was in fact not normal.

I have some really wonderful people that support me in my pregnancy team and luckily one of them was in the room with me catching up when a cardiologist for pediatrics came in. I met her when my son was in the NICU and had his lung issues but I never thought that we would ever meet again….

she came in and told me one of the scariest thing I’ve ever heard in my life besides being told my mom died. She told me we found something wrong with your daughter’s heart….

I lost every happiness I had in me from seeing my daughter on the screen when she told me that. I started crying and couldn’t control any of my emotions. The Dr told me that she has some idea about what’s going on and that she thinks my daughter has a rare heart disease called TOF. For those of you that don’t know what that is it stands for Tetralogy of the fallot in simple terms her top two chambers that connect to her lungs and blood supply are too small and won’t connect together properly which has also caused 2 holes in her heart.

I had no idea what to say or feel after hearing that my daughter has a rare heart disease my first thought is my daughter going to die and my second is she going to need to have heart surgery. The Dr told me I don’t believe you will loose your daughter but your daughter will need to have open heart surgery after she is born to fix the tubes and make it so they work the way they’re suppose too and this is going to be a lifetime illness that will need a lot of Dr visits a second future open heart surgery and a lot of monitoring. They gave me the option to abort my baby and that was never a thought in my mind and I would never choose that.

fast forward 1 week later I had to go to Manchester and do an emergency echo ultrasound on her heart to confirm her disease. During the ultrasound sound my dad came with me thank god! And got to see his newest grand baby and support me as much as he could. My cardiologist doctor confirmed that she indeed does have TOF and she will need to have surgery but they weren’t sure if it was going to happen at NB stage or a few month old stage.

I’ve been to several doctor appointments not only for her but for myself. On top of my daughter’s heart disease I got diagnosed with type 2 diabetes and this pregnancy has been the worst one I’ve ever had. The first 3 months I was sick in bed and barely saw my kids or was able to work.

I have followed all of my doctors requests and guidelines as I am a very high risk pregnancy and she is a very high risk baby. I am currently about to be 27 weeks pregnant and I am going to have my baby via C section at 38 weeks at boston hospital due to all mine and my babies conditions. With all my appointments I’ve needed to leave work for having to only work 5 hours a day because my doctor doesn’t want me to work but we can’t afford to not have me work as my husband is a stay at home dad and doesn’t make as much as I do when I work both jobs. When I have the baby he will be going back to work but for now this is what we have to do to make sure our family is provided for.

The doctors don’t know how long our little girl will be in the hospital for. They gave me a month guesstimate as they have decided to put a stint in her heart because last week at my 25 week echo they found out that her pulmonary artery is a lot smaller than they thought and she will have a hard time breathing on her own without something helping her get oxygen to her lungs. They have decided that she will have a stint put in her heart when she is born given the fact that they decide she won’t need surgery that day and they can have her grow a little and do the open heart surgery closer to 3-4 months old.

unfortunately Boston doesn’t have any housing that doesn’t cost something to stay there and we’re looking at just the month stay is looking close to 3000$ which literally I still cant wrap my head around that but not just that I went from being on maternity leave for 3 months to now possibly being out of work for 1 year to take care of my daughter before during and after her open heart surgery and also taking care of my other 3 kids.

we have a handful of family members that are able to stay here and there to help out but unfortunately our bills don’t stop when you go through a huge life event sometimes it feels like it gets harder and more stressful.

I already feel like a terrible parent for making such a post but sometimes in life you need a little help from your friends family and community. Chad and I are hard working parents that love our kids more than life itself but we are just in a pickle right now and want to make sure that we will be able to provide for ourselves and our babies while we deal with one of the hardest parts of life! Giving birth but not just having the baby but having a baby that has a rare heart disease that not many kids have each year. 1/2518 children are born with TOF.

I will be having my little claire in September so I have a little bit of time but we have to secure our housing before it gets too close to the due date as the spots fill up so fast. And I will be staying with her the whole time she is in Boston as we live in Lebanon and that’s a lot of driving back and fourth and we will need to make sure our other kids are being watched brought to school and taken care of while I’m with Claire and Chad is working. I’m terrified of what life is going to look like in September I know it’s going to be so hard stressful and so scary but you or somebody you know is able to help is anyway myself and my family would be so grateful and appreciative of any help you are able to do for our family during this new chapter in our life.

if you have finished reading the longest post ive ever written than thank you so much! Please if you can donate that would be greatly appreciated but also sharing this post and even praying for our little sweet girls arrival goes smoothly is even greatly appreciated!!