Isla is Battling HRHS with Tricuspid Atresia

Isla is a very sweet, beautiful and strong little girl that stole mine and my husbands heart as soon as she came into the world.

When I was 20 weeks pregnant during our normal ultrasound they found that our sweet isla had a congenital heart defect known as Hypoplastic Right Heart Syndrome and Tricuspid Atresia. To explain further it’s a birth defect where the valve that controls blood flow from the right upper chamber of the heart to the right lower chamber of the heart doesn't form. The lack of use to the lower right chamber results in a Hypoplastic right ventricle.

My OBGYN explained what her heart defect was, and that this Heart defect will need multiple surgeries to fix. Stage one being a BTT Shunt which she had at 24 days old. Stage two the Glenn which she’ll have that around 4-5 months of age and the third is the Fontan which should be around 3-4 years of age.

When she was born on March 1st she’s been fighting for her life ever since. once she was here she didn’t cry, and couldn’t breath… the doctors had absolutely no clue why she didn’t cry or wasn’t able to breath on her own. There was a team of nurses and doctors ready for anything to come their way when she arrived because they already knew she had a heart defect that could be life threatening, but that didn’t explain why she wasn’t able to breath on her own. They intubated her within 5 minutes of her being here and her journey began.

After getting her stable enough to move her, isla was sent to the NICU, as the nurses were getting her settled in I was moved to recovery and within an hour after giving birth Chris wheeled me over to finally meet our daughter.

5 days went by and they finally were able to give us an answer as to why she wasn’t able to breath. Isla was not only born with a heart defect but to add on top of that she has bilateral Choanal Atresia. It’s a symptom of a birth defect called CHARGE Syndrome. Choanal Atresia is the blocking of her nasal pathways by bone or tissue, in isla’s case it was bone. ENT came and took a look and told us she’ll need to have nose surgery before she’ll ever be able to get that breathing tube out. Once having that first nose surgery she had stints placed in her nose, that look so uncomfortable and scary, but she was able to breath through these tubes. Finally after 2 weeks of being alive she was able to breath on her own. This was the first time we got to hear our little girl cry. She was so happy and such a different baby once that breathing tube came out. At about 3 weeks old she started to show signs she needed her first heart surgery. Her O2 was staying in the lower 70s upper 60s and they wouldn’t come up. So she needed to be intubated again and even that didn’t get her O2 up. They scheduled her BTT shunt that following day, after having that procedure she was moved to the CICU “cardiac intensive care unit” for recovery on March 25th. We spent the next 20 days recovering from her shunt surgery and an additional choanal atresia repair.

We got discharged from the hospital on April 14th she spent 5 days at home before we found ourselves rushing her to the hospital with Oxygen levels so low a pulse ox wouldn’t even pick up. When arriving to the hospital she was immediately put into a trauma room and ever since I laid my baby girl down on that hospital bed she’s been going through things I wish she wouldn’t have to go through. Within 3 hours of being really unstable she was placed on Life Support to let her body rest. The Doctors found that her BTT shunt had formed a blood clot and was restricting blood flow to her lungs. The doctors then took isla to the cath lab and went through her femoral artery up to her heart with a ballon to try and suppress the blood clot. They were successful, the next day she came off life support and what we thought back to her normal self.

May 3rd Chris and I were woken up to a phone call from Isla’s Doctor informing us they had to intubate her again because her O2 levels were hanging in the upper 60s lower 70s and at one point she went in the 50s. So to keep her organs, brain and her safe they put her back on life support. Tomorrow (April 4th) she will be going back to the cath lab to place a stint in her shunt to try to keep this from happening.. for the third time.

with Isla being so critical We can’t work, she needs 24/7 care and her being on life support twice in 2 weeks we are terrified to even leave her side. We are never the ones to ask for help but sometimes we have to set that aside and just ask for help. Not being able to work has hurt us financially but we’re with her so when things seem so perfect while being with her in the hospital things in the outside world do not stop. Time keeps going, bills keep coming and we’re slowing drowning. I’m just reaching out and asking for help. We’re hoping soon Isla is going to get through this, have her 2nd stage of heart surgery and we’ll be able to return to work. The cardiac surgeon said they may keep her inpatient until then. She’ll be more stable after that Glenn surgery. Like I said she’s just way too sick right now. We’re scared for isla.

If you can’t donate all I ask is please pray for her.. shes so sweet and I would give anything for her not have to go through this. She’s our entire world.