Help Leah & Her 2 Moms Keep Fighting
$22,361 of $24,000 goal
Leah Valerie: Due July 4, 2013. Born May 8, 2013. 3.5lbs, 16.14in, 10 fingers, 10 toes, 47 chromosomes. Oh - and two mommies.
Leah has Down Syndrome, and has several of the medical issues associated with it. She has a choroid plexus cyst in her brain and one small and one moderate hole in her heart. Doctors are hoping these will resolve on their own. She was also born with long-gap esophageal atresia, which means that her esophagus and her stomach did not connect. Leah's form is particularly rare; not only did the two ends not connect, but a very long portion of the esophagus simply wasn't there. This would make for a much more complicated surgical repair. The day after Leah was born, her surgeons informed Mandy and Lisa that she was too small to do the repair, and that she needed to reach about 10 lbs before they could operate. They estimated she would reach 10 lbs in about 5 months. Then they told Mandy and Lisa that Leah could not go home until she had her surgery.
Since Leah's stomach and esophagus did not connect, Leah had no way to swallow her oral and throat secretions. She required constant suctioning of the esophageal pouch, and was at continual risk of aspiration pneumonia. As a result, Leah was not able to leave the hospital until her esophageal atresia was repaired.
After birth, Leah spent six months in the neonatal and pediatric intensive care units (ICU) before undergoing her major surgical repair on November 1, 2013. Thanks to your generous donations and support, Leah's mamas were able to stay a few blocks away from the hospital at the Los Angeles Ronald McDonald House during this difficult time so that they could be by Leah's side throughout her stay in the hospital.
Leah had a rough time early in her recovery from surgery; after a failed extubation, it was discovered that she had laryngomalacia (floppy larynx) in addition to her existing tracheomalacia, as well as some vocal cord nerve damage from the surgery. Leah remained on the ventilator for about another week, and continued on high-flow and then regular oxygen for several weeks after. It took about a month for her voice to return.
Leah remained in the hospital until her discharge on November 27. After another week and a half at Ronald McDonald House, she finally came home on December 8, 2013, her 7-month birthday.
Leah left the hospital on oxygen, continuous feeding via g-tube and feeding pump, and without the ability to feed orally. Her recovery will be a long-term ongoing process, but once she was medically stable, her doctors' priority was to get her out of the pediatrics unit before the onslaught of winter cold, flu and RSV cases on the floor; with her respiratory weaknesses Leah would be at serious risk if she were to contract an infection.
Now that Leah is home, she needs extensive day-to-day care and monitoring beyond what a typical child-care provider can offer, as well as frequent speech and occupational therapy visits so she can learn how to feed by mouth, something she has never done before. Down Syndrome also causes low muscle tone, so Leah needs physical and occupational therapy to help her reach basic milestones. She has a minimum of seven appointments per week. Because of her underdeveloped airway and congenital heart defect, she cannot go into a daycare program even part time due to the risk of respiratory infection.
Additionally, once Leah starts learning how to feed by mouth, she will require vigilant monitoring for two potentially life-threatening complications, aspiration (inhalation of foreign material into the lungs, which can result in pneumonia), and stricture (a narrowing at the surgical site which can cause choking and vomiting and which necessitates dilation by endoscopy). Both complications are common in children with post-repair esophageal atresia, and either complication could lead to further hospitalization. Leah has already experienced a persistent stricture that resulted in over a dozen procedures requiring general anesthesia over just a few months.
Leah and her Mamas need financial help to ensure that Leah has the care that she needs on a day-to-day basis.
I've been friends with Lisa and Mandy for over a decade, and have watched with pride as they achieved their dreams of Mandy becoming a community college professor and Lisa a disability rights lawyer. They each have a long history of service to the community in areas of LGBT equality and disability rights.
There are many causes in this day and age, but baby Leah could really use any generosity you find in your heart to give. I visited her in the NICU the weekend she was born, and while she was tiny, she was STRONG. She was wrapped in tubes but still lifting her feet to kick out at the glass every time her moms spoke her name. With moms like Mandy and Lisa, Leah will always have someone to fight for her and with kind donors like you in her corner, she'll get better so much faster!
Leah has come so far already, but she still has a long road ahead of her. Can you help by donating today and sharing this link with your friends and family?
Thank you in advance for your kindness and generosity. Every dollar makes a difference!
We do want to let you know that we will be participating in the Ronald McDonald House Walk for Kids next month, and we invite you to join our efforts to raise funds for the Ronald McDonald House to help support the families who need a home away from home while their child is in the hospital, as we did for seven months. You can help by making a tax-deductible donation on Leah's fundraising page, by joining Team LeahBug on the walk on April 12, or by becoming a virtual member of Team LeahBug. You can do all of these things by visiting Leah's fundraising page at http://leah.teamleahbug.com (the actual link is very long, so we set up a forwarding link to make it easier to share!)
Finally, I know we have said it many times, but we feel we can't say it enough - thank you for all of your support, kindness, and generosity, and thank you for opening your heart to Leah's story. We don't even want to think about what our lives might look like right now had we not been surrounded by the financial and moral support of our friends, family, and local and virtual communities during such a difficult time in our lives. You were our life-jackets; you kept us afloat and we will be grateful forever.
Once in the cath lab, Leah's doctors discovered that the VSD was larger than initially anticipated. There was a great deal of blood flow through the hole in Leah's heart, and she was in heart failure. They also found that they had a little Goldilocks on their hands - the device they had intended to use turned out to be too big, and the backup device they had ordered was too small! Thankfully, the third device they tried was juuuuust right. They ultimately used a "plug" intended for VSDs in a different part of the heart.
There is still some leakage around the plug, but already her enlarged heart appears to be a more normal size, and the doctor feels that the leakage has a good chance of closing up as the tissue in her heart grows around the plug.
One major complication that we are watching out for is the potential for blood clots, since they use major arteries for the catheterization. Leah's right foot was quite cold in the hospital, indicating diminished circulation. We brought her back up to the doctor on Friday because we felt that while it had improved in the hospital, it was not improving at home, and had gotten a little colder than it was when we left the hospital. They did an ultrasound and thankfully it looks like there is no clotting right now, but they have put Leah on low-dose aspirin and will be watching her closely - we have another visit on Monday. We are very grateful that her doctors are attentive and responsive to our concerns.
Thank you all for your thoughts and prayers during this nerve-wracking week, and always!!
The last time we wrote, Leah was in the hospital after a last-minute surgery to help her keep food down. She came home at the end of July, and managed to make it through the whole month of August with only one night in the hospital (her GJ came out).
September was not such a lucky month. Leah caught a mystery virus (the labs turned up negative for the usual suspects) and we had to take her to urgent care twice. The first time, she had a fever over 103 overnight and was super cranky, but somehow became smily and charming by the time we got to the doctor. He sent us home on antibiotics for her lungs but felt she didn't seem to be in any distress. She seemed to be getting better over the next few days, and then suddenly at the end of the week she was feverish and super-fussy again, and was struggling to breathe in her sleep. We took video this time so they would see what we saw at home, and they wound up admitting her directly from urgent care. She was there for about five days. In addition to lung issues arising from a viral infection, it turned out she was also severely anemic, and she received a blood transfusion and iron supplements.
We have some big news as a result of that hospitalization. You might remember that on top of everything Leah has already been through, she also has two holes in her heart, a small ASD and a moderate VSD. Leah's cardiologist had originally said that he didn't see any indication that Leah's heart needed to be repaired right away, so we could wait until she was 4 or 5 years old and see if the holes closed on their own.
During this most recent hospitalization, he changed his recommendation. The cardiologist now feels that Leah's heart needs to be repaired before the start of the cold and flu season or else she will spend the whole winter in and out of the hospital with respiratory infections, which wouldn't be good for her heart or for her lungs.
Initially this meant we were looking at open-heart surgery by the end of October. However, the pediatric cardiac interventionist proposed that he and a colleague attempt to repair the VSD via cardiac catheterization (that's where they go up through the arteries / veins in the leg). This is the way most ASDs and PDAs are repaired, but it is not really done very often for VSD repairs because of their location in the heart - and especially not in such tiny humans as Leah. However, the interventionist feels that the specific anatomy of her VSD makes her a good candidate for this procedure, in which he would plug the hole with a device typically used to close PDAs. He has not done this procedure with this device ever before, but believes it can be done and that it would help Leah avoid open-heart surgery. They will not repair the ASD; that is not as urgent and can be done later when Leah is bigger, and they don't want to push Leah too much.
Leah's heart procedure will take place on October 8. The cardiologist has told us to prepare ourselves for the interventionist to come out of the OR and tell us they couldn't do the procedure and we have to move ahead with scheduling an open-heart surgery, but he still feels it is worth trying this approach first. Avoiding open-heart surgery would be a very big deal for Leah, as it would be for anyone.
So that's our big news! Please keep LeahBug in your thoughts as her doctors try this outside-the-box approach to healing our outside-the-box BabyBug. And please enjoy the video I have attached of Leah showing off her newest skill. We thank you so much for your love and support. We are grateful every day for you, our friends, family and community, who help us face each challenge as it comes. And once again, l'shana tova to all who are celebrating. We wish you a happy, healthy and sweet new year.
To finish with a little bit of fun... a non-profit organization posted a photo of Leah in her piggietails, and the photo went viral! Almost 700,000 likes on the picture! So much fun to read the comments and hear that her smile brightened people's day.
As always, thank you for your support and for following Leah's progress!
Wow what a smile. I can't wait to meet her. Much love and strength to you all.
She is going to be better soon! Hang in there, we are with you!
I'm so thankful to Humble for bringing your story to my attention. As a mother, I send you all the love, healing, and light possible. I'm rooting for your family ALL THE WAY!! She is so gorgeous and absolutely worthy and deserving of a full and loving life. I wish you nothing less!
All three of you are so beautiful and strong that it brings tears to my eyes. I am so thankful to know you and to have met your precious baby girl.
As one of Mandy's students, I witnessed her happiness for the welcoming of her baby. Mandy is such a great person who has always been there for her students. It has been an honor to have such an amazing English Professor who has guided me all the way through the courses and I appreciate it very much. Therefore, I feel good to be part of those who have helped out Mandy and her wife. May you both continue being blessed with much more support! My prayers go out to baby Leah, a true little angel who deserves the best.
Sending positive thoughts to Lisa, Mandy and baby Leah!