Baby Clementine : 1 of 9

This photoshoot is a special one. It's much more than just beautiful images of a baby to hang on the wall. You see, Clementine hasn't had it easy. She will soon need a risky bone marrow transplant, being only 1 of 9 children to have the diagnosis she does. The family will be heading out of state soon so we knew it was imperative to capture her just as she is right now.

Clementine's Story, written by her mom

Clementine was born on August 22, 2022. Born at a healthy 7lbs 3 ounces after a long labor, but a quick delivery. At our 20 week ultrasound, the doctors discovered a small cyst in her body, requiring MANY scans and high risk appointments. We were reassured it was no big deal because it was not attached to any major organ. After delivery, Clementine was transferred by ambulance to Children’s Hospital of Pittsburgh where she underwent her first surgery. They quickly learned the cyst had grown so large, it was over 5 cm big AND it indeed was attached to a major organ. The cyst was removed from her liver. After she recovered from surgery, we welcomed her home to meet her big sister, FinnLee. Home is where we stayed for almost two weeks, adjusting to life as a family of four.

After about a week, we noticed Clementine was not acting “normal”. She was extra fussy, her belly was distended, and she was projectile vomiting. We had noticed some body tremors and left eye deviations as well. A few days had past and she seemed to look…almost yellowish. My mom heart told me something was wrong…but I didn’t know what that was. My mom convinced me to call her pediatrician. After a visit with her pediatrician, they felt like it was best if we go to Children’s Hospital of Pittsburgh to make sure nothing surgically was going on post surgery. 

On September 13th, 2022 our lives were forever changed….After several hours in the waiting room, we were able to get a few scans…head and belly ultrasounds, MRI’s, all the works. Everything came back normal. One doctor came in and looked at Clementine and said, “she just has acid reflux, some Pepcid should do the trick!” He then went to grab our discharge paperwork, but came back and said, “she looks a little pale…” Her dad and I laughed (because we are both very pale.) He offered to run her blood work just incase. Within 20 minutes he came running in telling us we needed to get upstairs right away. Without much explanation, I was signing papers for my daughter to receive a blood transfusion. I was being read all of the paperwork and we were rushed to the NICU. Her Hemoglobin was a 3.9…everyone was shocked she wasn’t on cardiac arrest. The first night in the NICU, Clementine received 3 aliquots of blood. Once she was stable, the continued to run test after test. We met with handfuls of doctors and nurses and specialists. They did an EEG and then a brain ultrasound which came back with increased Echogenicity in the basal ganglia and thalami, but her mri was within normal limits. She has had ultrasounds and X-rays of her belly and pelvis, and countless screenings for blood work. We then discovered during a scope she has Posterior laryngeal, Laryngomalacia that is moderate, short aryepiglottic folds, and an arytenoid prolapse. Since then we had been working with speech and OT. We did a swallow study which showed no aspiration, but she was desaturating on the monitor while eating and sleeping and choking and vomiting. 

We decided to do a sleep study for Clementine….this is when they found A LOT of episodes of not breathing due to obstruction apnea and central apnea…They decided she was going to undergo her second surgery to fix her airway. After surgery, she had a hard time breathing, so she was put on oxygen and given a feeding tube. 

After 36 days in the NICU, 5 blood transfusions, and no answers, we decided to go home and find a specialist who may have the ability to help us find answers for Clementine.

Clementine has received 10 transfusions so far in her 7 months of life. The longest stretch in between has been 3 weeks. After her last transfusions, she had a staring spell with her eye turning all the way inward. So we met with a neurologist at CHOP where she had another EEG. Although she did not have any seizures on the EEG, They cannot rule out whether she had one or not. So we are very closely monitoring her after transfusions to make sure she remains okay. 

If you'd like to donate to the cost's associated with Clementine's medical care, you can do so at this Go Fund Me page.

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