Challenging pregnancies are tough, and when Kristen and her husband had to go through one, it felt like someone tore their world apart. The lives that were overjoyed and so full of excitement to welcome their baby girl into the world, turned upside down when the doctor told Kristen and her husband about how their daughter’s brain did not seem to develop enough. The doctors were concerned, and only through further scans could the condition be diagnosed.
Only a few days before the baby entered the world, it was identified, and after Maeve’s birth, she was diagnosed with Lissencephaly. It is a condition where a baby’s brain does not fold normally. The worries did not just stop here, as when further scans were done, it turned out she also had Miller-Dieker Syndrome. It was fatal, and the baby had the severest type. Thus, without giving any false hopes, the doctors told the couple how the chances of their baby’s survival for more than two years were extremely low. Soon after her brother, when Kristen was going through her post-pregnancy phase, she admitted how she did not want to love the baby, knowing that she wouldn’t be here for long. She wanted to, but she did not know how to.
However, after spending days in NICU, the baby was allowed to be taken home, and it was then that Kristen got emotional. She loved her and cherished her presence. The fear was not about loving but about losing a piece of her heart, for whom she had gone through so much pain. On that Christmas, the couple decided they wanted to live normally with Maeve being an additional beautiful part of their lives. She was taken on road trips and had a family day out on the beach. Not just this, the family dinner never stopped. Kristen recalls how the world felt so beautiful the day she smiled, as they had been told she could never.
The baby loves water, and so seeing her love, hydrotherapy became a regular part of her routine. It did not just keep her at peace but was also a source of pure joy regularly. Other sources of joy were toys that light up, a few music tones, and ice cream, too. The parents also never said no to what she wanted, as they wished the short life of their girl to be full of love and joy. They tried to remember her smile and the little things they enjoyed so much because of her presence in the family.
When Maeve turned six months old, her health started to deteriorate. For a few days, she was not able to breathe fully, and it became a fear for the parents as they thought it was nearly time to lose their precious angel forever. The medication did ease her pain, but it did not last long either, as the hospital was more like their second home. However, despite all that she was going through, the spirit of Maeve couldn’t be ignored. She was showered with immense love and loved dressing up in the outfits. Although she could no longer smile because of the medications, the joy was evident.
Despite the doctors not having high hopes, Maeve could live till her first birthday, and it was celebrated through a big party that surrounded Maeve with all the people who loved her. She also received a swing as a birthday present. Another first milestone! However, as time passed, Maeve’s health was clearly deteriorating, and after spending 444 days with her beautiful family, onValentine’s Day 2018, she passed away. It was a peaceful death in her mother’s arms. Although saying goodbye was not easy for the family, they were always prepared and glad to have made the most of their time together. Her mother states that loving Maeve was the easiest thing to do!
