Patrice didn't think she was going to get pregnant again. She and Lenroy discussed it, hoped for it, but months and months later, dismissed it. It wasn't meant to be. Evie would be her last baby. They had Tyrone and Evie's memory and that would be enough. Then, poof, Patrice was pregnant! They were so surprised and happy. Poor Patrice was so sick with this pregnancy - just like her other two - but thrilled at the same time.
Of course, there were worries also. Patrice joked about her "geriatric" pregnancy. She had to have additional testing done, including genetic testing. These tests are what brought to light the fact that there was a high likelihood that their baby boy, Myles, would have Down Syndrome. Patrice immediately started researching everything Down Syndrome-related. She joined Facebook groups. She spoke with other DS moms and immediately forged friendships. Friendships that will last forever.
So Myles was born 4/3/17. He was adorable! Within a couple of days, doctors started noticing issues. Pulmonary hypertension for one. Of course, he didn't respond the way a "typical DS" infant would so his treatment would be trickier. The doctors were concerned about his lungs - weak oxygenation with overinflated lung tissue. Breathing was getting harder instead of easier. The doctors said Myles needed to be transferred to Boston Children's Hospital. Everything was a whirlwind there. Myles was intubated, on blood pressure meds, dopamine, epinephrine, heparin, morphine, vasodilators, etc. Talking with Patrice at this time was just so reminiscent of everything with Evie. It was so hard on them. Myles was also getting blood transfusions at this time. Patrice would say, "Evie and the doctors are working their magic!" but they were so scared. ECMO was next - giving Myles a chance to rest. It was doing the work for his heart and lungs...there were times that we didn't know if Myles would survive. It was so awful.
So here we are, nearly 60 days later. Myles has spent the first two months of his life in one hospital or another. He has had huge ups and huge downs. Patrice has been with him every single minute of every single day (unless she had Tyrone babysitting so she could go to her own Doctor's appointment). He has gone from Maine Medical to Boston's Children Hospital back to Maine Medical. He will have to have open heart surgery to repair the narrowing of his aorta at some point. Until then, he is growing stronger every day. Hopefully, he'll be coming home soon.
Now, why am I doing this gofundme for them? Myles has been in some sort of NICU, PICU or other hospital room for his entire life. He has received top notch care and will continue to need doctor's care his entire life. I cannot even imagine the doctor/hospital bills that have accumulated over these last 2 months. I just know the portion they will have to cover is going to be thousands and thousands of dollars. Myles will be on oxygen and a feeding tube at home. He will have weekly visits to the hospital for an echocardiogram and strict follow-up care and eventual open heart surgery. There will be visiting nurses and therapists. It is all so overwhelming.
With that, I ask for donations - no matter how small - to help ease the burden of all these hospital bills. I want them to be able to enjoy Myles and not worry about the medical bills piling up. This community is awesome and I know everyone wants to help in any way possible! Thank you all for always being there for my beloved friends, The McLeans.
- Evonne Roberts
- Kerry G. Bassett
- Alyssa Gamble
- Kim Kast
Organizer and beneficiary
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